I am going to Cranbrook tomorrow to see Wolverine and get some dinner.
Thursday, April 30, 2009
hope
Today I was way healthier. I am so disappointed that I can’t do dinner now. I was hoping to do it now. I signed up to be on the Special Olympics Team for Relay For Life. Caiden’s Mom is getting married. She tested negative for HD. Believe in life. Believe in now. Believe in the future. The future is now. It is here to stay. Our life will not go away. Just fight. It will stay. We fight every day. To be happy. To be normal. We fight. We are so strong, from all this fighting. The strength we have is amazing. We have the power to fight and never lose a second of our day. Fight over, and over. Fight for a smile. Fight for hope. Fight to keep your eye on the future. Fight for the hope to take over. It warms us, like the sunshine.
Wednesday, April 29, 2009
Drooling
Ester is hurt. She is on the mend. We have to wait for her to get better before we go about the dinner. Today I have been really sick. My dementia is getting so bad lately. Today, I called my Dad because I forgot my Grandma’s name when, I was filling Relay for life. I just could not get it. I notice a lapse in conversation, where I can’t remember what I was saying. Last night I was drooling and I felt like I was drowning again. Trevor said I was drooling over him! I keep seeing ghosts. Last night I was so scared to leave the computer room with Trevor. I thought it looked dark and scary. Joke. Every time I dance, Trevor still dances with me. Make HD as a big joke. That is how to swallow it. Swallow it with laughter. HD does not come here. We laugh you out. That is one of the ways that can keep you healthy. Laughter and smiles can save you. My Mom was really funny too. She had the sense of humor and alas a big smile. It lit up when we came in to visit.
What are the health benefits of olive oil? Is extra-virgin oil better than regular olive oil?
What are the health benefits of olive oil?
aA medditarian diet full of olives is recommened for us, for a reason.
Is extra-virgin oil better than regular olive oil?When choosing fats, olive oil is a healthy choice. Olive oil contains monounsaturated fat, a healthier type of fat that can lower your risk of heart disease by reducing the total and low-density lipoprotein (LDL, or "bad") cholesterol levels in your blood.
In contrast, saturated and trans fats — such as butter, animal fats, tropical oils and partially hydrogenated oils — increase your risk of heart disease by increasing your total and LDL cholesterol levels.
According to the Food and Drug Administration (FDA), consuming about 2 tablespoons (23 grams) of olive oil a day may reduce your risk of heart disease. You can get the most benefit by substituting olive oil for saturated fats rather than just adding more olive oil to your diet.
All types of olive oil contain monounsaturated fat, but "extra-virgin" or "virgin" olive oils are the least processed forms, so they're the most heart healthy. Those types contain the highest levels of polyphenols, a powerful antioxidant that also can promote heart health.
In contrast, saturated and trans fats — such as butter, animal fats, tropical oils and partially hydrogenated oils — increase your risk of heart disease by increasing your total and LDL cholesterol levels.
According to the Food and Drug Administration (FDA), consuming about 2 tablespoons (23 grams) of olive oil a day may reduce your risk of heart disease. You can get the most benefit by substituting olive oil for saturated fats rather than just adding more olive oil to your diet.
All types of olive oil contain monounsaturated fat, but "extra-virgin" or "virgin" olive oils are the least processed forms, so they're the most heart healthy. Those types contain the highest levels of polyphenols, a powerful antioxidant that also can promote heart health.
Specter Proposes Innovative Agency to Accelerate Cures for Diseases
New leglisation to keep an eye out on! You can download the attachments mentioned below from this link. The GREAT thing is the proposed Cures Acceleration Network will fund both researchers who have access to private matching funds and those who do not. Biotech companies, universities, research institutions, patient advocacy organizations and pharmaceutical companies will all be eligible to apply for research grants under the proposed guidelines.Specter Proposes Innovative Agency to Accelerate Cures for Diseases
http://specter.senate.gov/public/index.cfm?FuseAction=NewsRoom.NewsReleases&ContentRecord_id=ed5151e2-a18a-36de-f7d6-725a233f8625
Cures Acceleration Network aims to bridge "Valley of Death"Washington, D.C. Tuesday, April 28, 2009U.S. Senator Arlen Specter today introduced legislation that seeks to bridge the chasm between a basic scientific discovery and a new health treatment. The Cures Acceleration Network (CAN) Act would create an independent agency dedicated to advancing science from the laboratory into practice."The Cures Acceleration Network will turn discoveries in biomedical research into better health for the American people," Specter said. "We must do this on the scale and with the focus of the way we sent astronauts to the moon. And we need to start now. Americans battling cancer, autism, Alzheimer's, Parkinson's, diabetes and so many other dreaded diseases have not a minute to waste."Many biomedical discoveries with the potential for development never advance beyond publication in a scientific journal due to a lack of resources or insurmountable red tape. The issue is so prevalent that researches have coined the term "the valley of death" to describe why promising discoveries, such as genes linked to cancer and Parkinson's disease, languish in the laboratory. The CAN Act seeks to release this untapped scientific knowledge with great potential for health and economic benefits.The CAN Act would address the barriers in translational research by accomplishing two things: 1) establishing an independent agency known as the Cures Acceleration Network (CAN) to fund promising discoveries, and 2) reauthorizing the National Institute of Health (NIH) at a funding level of $40 billion in fiscal year 2010.The CAN Act would fund two types of grant awards, each with an authorization of $1 billion in the first year and additional funds in succeeding fiscal years.1) The Cures Acceleration Grant Awards will provide grants of up to $15 million per year per project with out-year funding available. These awards would be available to applicants who do not have access to private matching funds.2) The Cures Acceleration Partnership Awards also would provide grants for up to $15 million per year per project with additional funds available in the out-years. However, grant awards would require a match of three Federal dollars to one grantee dollar, as a way to partially offset development costs.For both grant types, the CAN Board may waive the award limitation as well as modify the matching requirement. Eligible grantees would include biotech companies, universities, patient advocacy organizations, pharmaceutical companies and research institutions.To provide for expedited FDA approval, the grantees must establish protocols that comply with FDA standards to meet regulatory requirements at all stages of medical product development, review and approval. The provisions of the Bayh-Dole Act would apply.The CAN grant proposals would be evaluated by a 24-member board comprised of experienced individuals of distinguished achievement and representative of a broad range of disciplinary interests including: venture capitalists and business executives with experience in managing scientific enterprises; scientists with expertise in the fields of basic research, biopharmaceuticals, drug discovery, drug delivery of medical products, bioinformatics, gene therapy or medical instrumentation, regulatory review and approval of medical products; and representatives of patient advocacy organizations.
Other tidbits from a scarce group of news groups covering this Act [note Specter switched from {R] to {D] party affilication yesterday]:According to Senator Arlen Specter (R-PA), CAN will make awards outside of traditional funding streams with the goal of accelerating the development of cures and treatments, including drugs, medical devices and behavioral therapies. The new agency will have a flexible and expedited review process to get funds to grantees as quickly as possible.According Specter, the CAN funding will be complementary to - and not competitive with NIH funding. The Cures Acceleration Network will fund both researchers who have access to private matching funds and those who do not."Nothing is more important than curing the diseases that damage our spirits, hurt our families and take our lives," said Senator Specter, himself a cancer survivor. "More money alone won't get us faster cures.we must do this on the scale and with the focus of the way we sent astronauts to the moon. And we need to start now. Americans battling cancer, autism, Alzheimer's, Parkinson's, diabetes and so many other dreaded diseases have not a minute to waste."This Act may be cited as the ''Cures Acceleration Network and National Institutes of Health Reauthorization Act of 2009''. "Senator Specter's important legislation deserves the enthusiastic support of anyone who has been affected, directly or indirectly, by autism, cancer, diabetes and the other terrible diseases of our time," said Bob Wright, Autism Speaks co-founder. "Now is the time to redouble our federal government's commitment to science and innovation in the search for better treatments and cures."
To help go to the contact form.
Go to issue and click healthcare
click below and go to other
email a request to get this law approved.
Tuesday, April 28, 2009
Bowling
Today was the last Special Olympic bowling. It was sad to leave my Special Friends. I did really good today though. I gained 17lbs. I am getting healthier. My WIIFIT is making me healthier that way too. It was not good being 100lbs. I got my ears cleaned today. They are so much better. I took my morning meds at night last night. I was up all night because of that. Keep on living. That is what life is for.
Made New Ways to prevent burnout page
Made New Ways to prevent burnout page Got to the Care Giving tips to find it.
Olympic medallist faces uncertain future
This poor HD rower has to give up her career to get help for her HD. I feel for then woman.
Monday, April 27, 2009
HD Dinner
Me and my Nurse Shirley are working for plans for my dinner. She does Relay for life and led Cancer dinner’s here. She is a survivor who got me, involved in Relay for life this year. I have too get a hold of my favorite Gleaner’s chairman, Polly. Her and Ester, also at the Gleaner’s both can help me arrange and they cater fundraisers. Ester also volunteers at a program the Gleaner’s called TAPS, it is a senior group that makes them get outside and have fun. If I give them 20 cents of a ticket they will let us get that TAPS hall for free. I got it all figured out. I want to do this for HD awareness month. I am going to call Polly and find out more information. That hall will set 80 people. The Grocerie Store Overwaite will discount the food for us too. I know I can pull this all off. I know this will be huge. It is the first HD event here. There was a really negative article about HD in the paper. It told them about the bad side. Now all of my neighbors and friends are freaking out. All kinds of prayers now. No one wants to see this little young girl die. That is why I think we have the perfect shot of getting this successful.
Sunday, April 26, 2009
Accpet yourself
I thank my Dad. I did have to get more space for my site. We got a good deal here. It is an expensive hobby. I hate having my Dad paying for it. My Dad knows how important this site is for me. It is keeping me happy and all of you happy. I got my free dot.com back. Thanks Dad. I have no idea where I would be without my Dad. Trevor calls him and tells him how I am doing. Treat us the way you treat others. We are people. We have feelings. We are the same person inside. Love us, as that. Love yourself as that. Actions do not define us. Actions don’t make us. Actions create understanding. I know how it is to be judged, so do we all. Don’t judge us. Remember to treat us the way we deserve. With dignity and respect. That is all we are asking for. We still always will be the same, even though we have changed. We may be different. Don’t judge yourself. Accept that HD makes us make mistakes. Accept those little mistakes and live your life. Your great. Live your life and know that.
Friday, April 24, 2009
Podcast with Trey Gray
About Trey Gray. WEAREHD.org wants to start podcasts. I will do them. We were thinking that maybe Trey Gray can be our first guest. I am glad he is ready to help. I just wanted people to give him time to process HD. I got it. I know how it feels to get diagnosed. You don’t want people to berate you and try to get you to help right away. I am thinking more of an HD dinner now. To test the waters to see if we can have enough people to do the walk. There are local people here who go long distances to get help. I am having a healthy day. My WIIFIT said I am 40 today. After cleaning my ears, my infection is gone. I have energy, balance, and no earaches. I think that is all it takes. Today some one negative tried to get to me. It is very hard some days to run the only positive blog and website. I get lots of hatred and people who think of me still giving false hope. This is real hope. These cures and treatments are all real. I have all the articles backing us up here. The hope and our future are real. They are sunny and no rain. It is beautiful in the future, with no pain. If you want me to stop, you make me stronger.
Trey Gray
Dear Friends, I have some very exciting news! The other day I got a call from Brooks & Dunns Drummer Trey Gray who has HD. For those who are not familiar with Brooks and Dunn they are a very popular country group. He is planning on coming to our festival/fundraiser and helping anyway he can. He told me that if we get a few items he can have the guys sign them for us and then we can auction them off or something. He can also bring CD's and possibly some concert tickets!! Trey was raised in the Mishawaka/ South bend area. So he likes to do things close to his hometown, even though he is currently living in Nashville. He is also willing to do any TV, phone or radio interviews to help raise awareness for HD. We are all very Excited!
Thursday, April 23, 2009
Ears
I was thinking of putting a dinner or the walk. Now that Trevor is laid off. We have to see how much the Rec Center costs, and how much we can get at the charity funds here. They have the Lion’s and the Legion here. We might have to use ministry money again to go to Calgary to see my Doctor’s. They screwed us out of disability. Trevor is laid off, he is going to apply for EI again. We thought we closed the claim, but they did not see that. We can’t get disability again until August. I was really sick the past two days. I was so out of balance. I almost fell hard three times. I tripped into the car in and out of the hospital. My ears are full of wax. I have to get it cleaned. We got ear drops. We have to get that done before they can tell me if I have an ear infection. They did some cleaning at the hospital. They brought a needle and told them no way. When Gary comes down, we are taking him to a disability fishing spot here. We will take him for a ride up Goat Mountain. Take him camping. It will be fun. We are going to Cranbrook this weekend. We are going to see Wolverine and have dinner.
Huntington's Disease: Gene Therapy Offers New Hope For Treatment
Huntington's Disease: Gene Therapy Offers New Hope For Treatment Of Neurodegenerative Disorder Researchers from the University of Southern California have taken an important first step toward protecting against Huntington disease using gene therapy.
Huntington disease begins to take hold early on
A global analysis of brain proteins over a 10-week period in a mouse model of Huntington Disease has revealed some new insights into this complex neurodegenerative disorder. For example, profound changes (comparable to those seen in late-stage HD) actually occur well before any disease symptoms show up, and most of the changes are confined to a specific stage during disease progression. These findings should aid in determining the optimal times for therapies that aim to treat or cure this disease.
UBC researchers link Huntington depression to genetics
The depression experienced by people with Huntington disease (HD) may have nothing to do with the emotional stress of knowing you have a devastating, incurable disorder, according to a University of British Columbia study published in the journal Brain.
2nd Annual Family Day
2nd Annual Family Day &
Huntington Disease Symposium
For families, healthcare professionals, researchers and students.
CITY LOCATION TIME
London ON Parkwood Hospital, 801 Commissioner’s Rd. East 1:30 pm – 5:00 pm
Ottawa ON Royal Ottawa Mental Health Center
1145 Carling Ave.
Associates in Psychiatry Auditorium, Main Level
12:00 noon – 4:30 pm
Moncton NB University of New Brunswick 10:30 am – 5:15 pm
Winnipeg MB University of Manitoba
Bannatyne Campus, 730 William Ave.
Theater A, Basic Medical Sciences Bldg.
11:30 am – 4:30 pm
Saskatoon SK University of Saskatoon, College of Education,
Education Bldg., 28 Campus Dr. (look for signs)
9:15 am – 2:30 pm
Calgary AB Health Sciences Center, Room G500, 3330
Hospital Dr. N.W.
11:45 am – 3:45 pm
Halifax NS Royal Bank Auditorium, Halifax Infirmary site,
QEII Health Sciences Centre, 1796 Summer St.
1:15 pm – 5:00pm
Family Day – June 6, 2009
An innovative way to connect and learn.
Join us as we beam some of the best HD
researchers in the world to a community
near you!
The Huntington Society of Canada, together
with the Faculty of Medicine at the University
of Ottawa, and with Schools of Medicine and
University Departments across Canada,
are bringing some the best researchers and
clinicians in the world on Huntington disease
(HD) to your community, using the latest in
interactive videoconferencing combined with
local programming initiatives.
Building upon the success of last year’s
Family Days HSC is taking Family Day across
the country again. HSC invites medical
students, individuals living with HD, family
physicians, those at risk for HD, health
professionals, caregivers, researchers,
family members, and university students to
attend this FREE conference.
You will leave knowing the latest news on HD
research and having heard a powerful and
positive message on ways to strengthen the
quality of life of those living with HD.
National Keynote Speakers will provide
insight into the latest HD research news and
living with HD.
Innovative local programming hosted by the
local Chapter will unite professionals and
families in our effort to provide effective
compassionate care, while we collaborate
internationally to reach for the summit –
achieving a world free of Huntington’s
Please check the HSC website www.
huntingtonsociety.ca for details on your local
event.
CITY LOCATION TIME
Peterborough ON Holy Cross Catholic Sec School, 1355 Lansdowne
St. W.
9:00 am – 3:45 pm
Edmonton AB Glenrose Rehabilitation Hospital, Dr. Bill Black
Auditorium, Gleneast, 10230 - 111 Ave.
9:30 am – 2:00 pm
Victoria BC Royal Jubilee Hospital, The Woodward Room,
Begbie Hall, 2101 Richmond Rd.
9:30 am – 3:00 pm
Vancouver BC St. Paul’s Hospital, ROOM 1477, Providence
Level 1, 1081 Burrard St.
9:30 am – 1:30 pm
St. John’s NL Health Sciences Centre, Faculty of Medicine,
Medical School, 300 Prince Philip Dr.
1:30 pm – 4:30 pm
Family Day – June 13, 2009
Keynote Speakers:
June 6, 2009
Dr. Michael Hayden
MB, ChB, PhD, FRCP (C), FRSC
Director of the Center for Molecular Medicine
and Therapeutics, UBC. He focuses his
research primarily on genetic diseases,
including genetics of lipoprotein disorders,
Huntington’s disease, predictive and
personalized medicine. His group has identified
10 disease-causing genes. He is the recipient
of numerous awards including CIHR Canada’s
Health Researcher of the Year for 2008 and was
one of the five finalists of the Globe and Mail’s
Nation Builder competition in 2008.
June 13, 2009
Dr. Blair R. Leavitt
MD,CM FRCPC (Neurology)
Dr. Leavitt is currently a Scientist at
the Centre for Molecular Medicine and
Therapeutics and an Associate Professor
in the Department of Medical Genetics &
the Department of Medicine, Division of
Neurology (Associate) at the University of
British Columbia. A long-standing member of
the HSG, he is a HD clinical trial investigator,
and neurologist at the UBC HD medical clinic
in Vancouver. A laboratory scientist as well
as a practicing neurologist, His laboratory
is dedicated to developing and testing new
treatments for genetic diseases of the brain
and spinal cord. His research also includes
major clinical programs searching
Huntington Disease Symposium
For families, healthcare professionals, researchers and students.
CITY LOCATION TIME
London ON Parkwood Hospital, 801 Commissioner’s Rd. East 1:30 pm – 5:00 pm
Ottawa ON Royal Ottawa Mental Health Center
1145 Carling Ave.
Associates in Psychiatry Auditorium, Main Level
12:00 noon – 4:30 pm
Moncton NB University of New Brunswick 10:30 am – 5:15 pm
Winnipeg MB University of Manitoba
Bannatyne Campus, 730 William Ave.
Theater A, Basic Medical Sciences Bldg.
11:30 am – 4:30 pm
Saskatoon SK University of Saskatoon, College of Education,
Education Bldg., 28 Campus Dr. (look for signs)
9:15 am – 2:30 pm
Calgary AB Health Sciences Center, Room G500, 3330
Hospital Dr. N.W.
11:45 am – 3:45 pm
Halifax NS Royal Bank Auditorium, Halifax Infirmary site,
QEII Health Sciences Centre, 1796 Summer St.
1:15 pm – 5:00pm
Family Day – June 6, 2009
An innovative way to connect and learn.
Join us as we beam some of the best HD
researchers in the world to a community
near you!
The Huntington Society of Canada, together
with the Faculty of Medicine at the University
of Ottawa, and with Schools of Medicine and
University Departments across Canada,
are bringing some the best researchers and
clinicians in the world on Huntington disease
(HD) to your community, using the latest in
interactive videoconferencing combined with
local programming initiatives.
Building upon the success of last year’s
Family Days HSC is taking Family Day across
the country again. HSC invites medical
students, individuals living with HD, family
physicians, those at risk for HD, health
professionals, caregivers, researchers,
family members, and university students to
attend this FREE conference.
You will leave knowing the latest news on HD
research and having heard a powerful and
positive message on ways to strengthen the
quality of life of those living with HD.
National Keynote Speakers will provide
insight into the latest HD research news and
living with HD.
Innovative local programming hosted by the
local Chapter will unite professionals and
families in our effort to provide effective
compassionate care, while we collaborate
internationally to reach for the summit –
achieving a world free of Huntington’s
Please check the HSC website www.
huntingtonsociety.ca for details on your local
event.
CITY LOCATION TIME
Peterborough ON Holy Cross Catholic Sec School, 1355 Lansdowne
St. W.
9:00 am – 3:45 pm
Edmonton AB Glenrose Rehabilitation Hospital, Dr. Bill Black
Auditorium, Gleneast, 10230 - 111 Ave.
9:30 am – 2:00 pm
Victoria BC Royal Jubilee Hospital, The Woodward Room,
Begbie Hall, 2101 Richmond Rd.
9:30 am – 3:00 pm
Vancouver BC St. Paul’s Hospital, ROOM 1477, Providence
Level 1, 1081 Burrard St.
9:30 am – 1:30 pm
St. John’s NL Health Sciences Centre, Faculty of Medicine,
Medical School, 300 Prince Philip Dr.
1:30 pm – 4:30 pm
Family Day – June 13, 2009
Keynote Speakers:
June 6, 2009
Dr. Michael Hayden
MB, ChB, PhD, FRCP (C), FRSC
Director of the Center for Molecular Medicine
and Therapeutics, UBC. He focuses his
research primarily on genetic diseases,
including genetics of lipoprotein disorders,
Huntington’s disease, predictive and
personalized medicine. His group has identified
10 disease-causing genes. He is the recipient
of numerous awards including CIHR Canada’s
Health Researcher of the Year for 2008 and was
one of the five finalists of the Globe and Mail’s
Nation Builder competition in 2008.
June 13, 2009
Dr. Blair R. Leavitt
MD,CM FRCPC (Neurology)
Dr. Leavitt is currently a Scientist at
the Centre for Molecular Medicine and
Therapeutics and an Associate Professor
in the Department of Medical Genetics &
the Department of Medicine, Division of
Neurology (Associate) at the University of
British Columbia. A long-standing member of
the HSG, he is a HD clinical trial investigator,
and neurologist at the UBC HD medical clinic
in Vancouver. A laboratory scientist as well
as a practicing neurologist, His laboratory
is dedicated to developing and testing new
treatments for genetic diseases of the brain
and spinal cord. His research also includes
major clinical programs searching
May is HD awareness month
The HD community can retain the momentum, and
sustain and enhance our offerings.
We intend to continue to offer new services to
reach out and support more people through
programs like Staying Strong and Family
Days. We have broadened and deepened the
level of Individual and Family Services we
offer and we’ve strategically increased our
investment in research.
In recent years, the Society was able to aside
some money to fund research and to support
families in the event of a rainy day. Over the
past four years, up to our last fiscal year,
Society revenue has increased by over 61%.
The current economic environment might
bring a little rain into our lives but we must
keep focused on the section of the journey
before us today. At the 2/3 mark in our fiscal
year, it looks like together we will be close to
making our 2008/09 budget.
We are looking forward to the upcoming
year with great anticipation. Plans are
still on the drawing board but we will be
celebrating our 35th year as a Society with
memorable events and promotions. Our
generous anonymous donor is helping to
commemorate our milestone by giving an
additional 35% for every gift we receive over
$2.2 million!
Under the leadership of Michael Hayden
and Blair Leavitt at UBC, the international
HD community is coming to Vancouver from
September 12 to 15th for the World Congress
on Huntington Disease. It will be an exciting
and uplifting event designed to bring families
and scientists together as one in the fight
against HD. It’s a chance to see the richness
and diversity of the extended HD family from
around the world, including the international
movement of family organizations. It’s also
an opportunity to see Canadian leadership in
action.
This reminds me that we are not alone.
We are part of a world class international
coalition. People, like our anonymous
donor, are with us and are cheering us on.
They are impressed and are encouraging
us to continue to climb higher to make our
collective dream a reality.
As a fellow traveler, I say thank you for your
continued support along the way and for
being part of a wonderful success story.
May is Huntington
Disease Awareness Month
By: Katie Dance, Communications Officer
Spring has arrived bringing not only warm
weather and green grass, but also the arrival
of Huntington Disease Awareness Month.
The Huntington Society of Canada has
a Public Service Announcement (PSA)
campaign to mark Awareness Month, and the
campaign continues this year to help raise
awareness of this little known disease.
The campaign entitled “What Will I Be When
I Grow Up” juxtaposes the image of a young
child in a school classroom in front of a
blackboard that carries a message about
what her future holds when she grows up
and manifests Huntington disease (HD)
symptoms. The campaign is hard hitting, and
grabs the attention and makes an impact on
the general public, who generally do not have
any knowledge about Huntington disease.
As with all of our previous Public Awareness
Campaigns, this new campaign is not
intended for the Huntington community. Our
campaign is aimed at the general public who
know very little about HD, or have never even
heard of it before. Although the Huntington
community will see it in the media from
time to time, it is not targeted to people who
understand the disease. Our community
already knows what it is like to live with this
disease.
The PSA campaign appears in newspapers
and on radio stations across the country.
Keep an eye on the media during the month
of May not only for our PSA, but for stories
that may be appearing in local media.
To access the PSA (both print and radio)
please visit the HSC website
www.huntingtonsociety.ca.
It is never too late to start thinking about how
you are going to create awareness in your
community. You don’t have to be a member of
a chapter executive or an area representative
or even a regular Huntington Society of
Canada (HSC) volunteer to help us with the
vital tasks associated with May Awareness
2009!
There are many ways to take awareness
about Huntington disease to the public.
Creating dialogue about life with HD and
what HSC is doing about it will mobilize new
segments of communities from awareness
to action. These actions include giving the
critically needed gifts of the time and funds
to make a permanent difference in the lives
of those living with HD.
While events happen across the country
throughout the year, May gives volunteers
and Chapters an extra opportunity to
raise awareness. Please check out the
calendar of events on the HSC website www.
huntingtonsociety.ca for events happening in
your community.
Events across the country
in May
GEMS Walk- Toronto, ON
HD Quad Adventure- Winnipeg, MB
Peterborough Huntington for a Cure Relay
Walk- Peterborough, ON
Calgary Walk-a-Thon- Calgary, AB
Ottawa Run Weekend/Marathon- Ottawa, ON
Russell Historical Walk- Russell, ON
Maxim Power for HD Kids
I was part of this Chapter. Trevor and I rasied money with them.
Maxim Power for HD Kids
Maxim Power for HD Kids
The Huntington Society of Canada’s new
Kids for HD program was a natural fit for
one of Calgary, Alberta’s power producing
companies. Maxim Power Corp has offered
to provide $25,000 annually for the next four
years to help the innovative pilot program
reach children and families living with
Huntington’s disease (HD).
“It’s kids and it’s very consistent with our
whole philosophy on community investment,”
said John Bobenic, President & CEO for
Maxim Power Corp. “What we seek to
find are those charities that are perhaps
less advertised and not as well funded but
specifically provide benefits to children with
challenges – and their families as well – that
can’t access the resources that they
otherwise need.
“It’s about the children and it’s about the
impact that their struggles have on the entire
family unit. That’s a perfect t fit for us and a
very near and dear cause for us.”
Kids for HD is being developed by HSC to
help children adjust and adapt to living
with HD, staying strong throughout the
process. This innovative, world-class effort
will evolve over a three-phase period: Phase
One – research, planning and organization
from November 2008 to February 2009;
Phase Two – programming from February to
October 2009; and Phase Three – evaluation
and a final report in November and
December 2009.
The program will focus on junior high and
high school students ranging in age from 14
to 18 in the Calgary, Red Deer and Edmonton
areas. Participants will include children who
have the HD gene and will inevitably show
symptoms during their lifetime (about 600)
and those without the gene whose parents
either have developed HD symptoms or are
at risk of getting the disease (another 1,200).
HSC will consult with experts in the
fields of child psychology and health and
development to assemble materials, explore
a range of delivery options, and then
design, produce and test a comprehensive
program that will introduce children to
HD. The program will be a versatile one,
assisting children who are struggling and
encouraging those who are doing well to do
even better. The second group will be invited
to take leadership roles in creative projects
designed to help strengthen the program and
build leadership skills along the way.
Maxim Power Corp is involved in the
acquisition, development, ownership and
operation of power generation facilities
in Western Canada, the United States and
France. The company began supporting
HSC approximately two years ago through
donations to fundraisers organized by the
Rotary Club of Calgary Olympic, which held a
silent auction on behalf of HSC. When asked
if the company could provide a donation to
the event, Maxim Power Corp generously
handed over a cheque for $5,000 two years
in a row.
Last fall, Paul Evered, Director of Major Gifts
for HSC, and Tara Johnson, the Rotary Club’s
president and a member of HSC’s board of
directors, approached Maxim Power Corp
with the Kids for HD proposal. John didn’t
hesitate to offer the company’s support.
“I credit Tara,” he said. “I think she’s a true
champion and heroine for the cause and
I think she presents such a compelling
opportunity for a company like us to support.
It was an easy decision.”
He hopes that the company’s involvement
will serve as a catalyst, encouraging other
companies and individuals to see the merit
behind the program and offer their support.
“I hope it gets big and I hope it gets the
attention it deserves,” John said.
www.maximumpowercorp.com
Genetic Discrimination
Last fall, the Huntington Society of Canada was successful in bringing
the issue of genetic discrimination to the attention of Canada’s
Conservative government. Since that time, HSC has been instrumental
in establishing the Canadian Coalition for Genetic Fairness (CCGF),
an advocacy-based organization urging the Canadian government
to develop and implement a “made in Canada” strategy designed to
eliminate this type of discrimination.
The CCGF wants to ensure that genetic data is used properly without
fear of repercussion. Genetic discrimination is a reality in Canada,
causing people to be rejected for employment or considered for a
lower level of employment, or resulting in a loss of access to insurance
based on the presumption that the individual may be disabled in the
future. The new strategy would prevent employers and insurers from
pushing applicants to take genetic tests or using genetic information
or family histories for the purpose of assessing the applicant’s risk of
becoming a liability by being disabled at some point in future.
Interest in CCGF has been growing at a steady rate with confirmed
membership from a number of organizations, including the ALS
Society of Canada, Alzheimer Society of Canada, Canadian Cystic
Fibrosis Foundation, Canadian College of Medical Geneticists,
Huntington Society of Canada, Muscular Dystrophy Canada, Multiple
Sclerosis Society of Canada, Osteoporosis Canada, Ovarian Cancer
Canada, Parkinson Society of Canada, Spina Bifida and Hydrocephalus
Association of Canada, the Foundation Fighting Blindness, the Centre
for Molecular Medicine UBC and the Tourette Syndrome Foundation of
Canada. Other organizations are showing continued interest in joining
the cause.
Recently, Jo Anne Watton, HSC’s Director of Individual and Family
Services, met with the prime minister’s office and confirmed that the
government has not backed away from its platform commitment to
HSC. She has received support from Minister of Justice Rob Nicholson
and also sent letters to the federal ministers of industry, health,
intergovernmental affairs and labour, followed by meetings with the
justice, industry and health ministries.
“We’re routinely ‘papering’ Ottawa every week,” Jo Anne explained.
The goal of the CCGF is to see changes made to the Personal
Information Protection and Electronic Documents Act (PIPEDA), which
is being reviewed beginning this year and extending into 2010. Trying
to advocate for a change to human rights legislation would take years,
Jo Anne explained. Having changes made to PIPEDA is much more
feasible and would still provide a huge benefit to people with HD and
their families.
HSC is building a growing list of contacts within the federal
government and routinely forwarding news articles featuring issues
pertinent to HD. Pushing the issue of genetic discrimination into the
forefront also involves reaching out to other stakeholder agencies
and making contact with local MPs. Jo Anne is working on a new
communications strategy that will give more publicity to CCGF
through various communications vehicles and the HSC website.
“(HSC is) really taking a lead in this,” Jo Anne said. “We are showing
the leadership. Other people are joining but it’s our leadership that’s
bringing this together.”
CCGF’s goal is to ultimately protect the personal information of
people with genetic diseases or disorders, allowing them to make the
decision to undergo predictive testing in their own time and for their
own reasons. This very personal information needs to be shielded
from organizations like insurance companies, who can currently deny
essentials like mortgage, life and disability insurance based on a
genetic predisposition to a disease.
There have been known cases where clients have gone to their
banks for mortgage insurance and were denied because someone in
the family had a history of HD, even though the applicant was gene
negative and not at risk of developing the disease, Jo Anne explained.
Protecting people from genetic discrimination has many benefits,
particularly the freedom to allow individuals to get testing done when
they’re emotionally prepared without worrying about a backlash from
insurance providers or employers. It could also mean more people
would be willing to get involved in clinical trials, boosting research
efforts and creating a better understanding of the genetics behind
disease.
The issue is a critical one. As research advances, there are more and
more diseases displaying a genetic component. “Who among us has
perfect genes?” Jo Anne pointed out. “Everyone will be at risk and no
one will be insured.”
Though other countries have taken important steps in eliminating
genetic discrimination, Canada is falling behind. But CCGF is
working hard to bring a necessary level of privacy and protection to
Canadians. It’s a long, slow process but one that continues to forge
ahead.
Reaching an acceptable level of protection from genetic
discrimination is “a bit of an evolutionary thing,” Jo Anne said. “How
we are able to make that happen will depend on the opportunities
that are put before us.”
Saturday, September 12, 11:30 am (PST)
Westin Bayshore, Vancouver, BC (World Congress on HD)
Proxy is included with this issue. Ensure that your membership is in good standing to make certain your vote counts.
Huntington Society of Canada
Wednesday, April 22, 2009
Might have an ear infection
I am going to emerg tomarrow to find out if I got another ear infection.
Sick again
I have done all thee work I am doing for today. I laid out another fever. This one is extra high.
Preimplantation genetic diagnosis option on a slippery slope?
Prenatal testing comes in many forms and requires a thoughtful decision.
Stress Free Zone
Every once in a while, each of us has a sense of total peace and contentment — being "in the zone."
Cognitive behavioral treatment helps treat insomnia
I mentioned that CBT can be used for other disorders besides depression.
Insomnia has also been shown to improve with CBT. Cognitive behavioral therapy can be provided both individually or in a group setting. The importance of a quality night's sleep can't be emphasized enough, especially when dealing with depression. Just think about it, if everything in your life is going well and your only problem is your sleep, this alone can significantly disrupt your life.
Even not sleeping well for one night can make your depression worse. A comprehensive treatment plan, including an insomnia evaluation, is necessary to successfully treat depression. Treating your insomnia will likely require that you make changes in your life. Medication may be recommended to use short-term for insomnia, depending on the cause. Share with others here if you've found CBT effective in treating insomnia.
Insomnia has also been shown to improve with CBT. Cognitive behavioral therapy can be provided both individually or in a group setting. The importance of a quality night's sleep can't be emphasized enough, especially when dealing with depression. Just think about it, if everything in your life is going well and your only problem is your sleep, this alone can significantly disrupt your life.
Even not sleeping well for one night can make your depression worse. A comprehensive treatment plan, including an insomnia evaluation, is necessary to successfully treat depression. Treating your insomnia will likely require that you make changes in your life. Medication may be recommended to use short-term for insomnia, depending on the cause. Share with others here if you've found CBT effective in treating insomnia.
Making the move to a care facility
The reality of persons diagnosed with Alzheimer's disease or a similar progressive dementia is that many will ultimately need to make a move because they need more care than can be provided at home.
Cambridge Run
Hi All!!Hope you can sponsor Me, Becky and our friends for our 5km run from Cambridge Regional College, Kings Hedges Road to Anglia Ruskin University, East Road. We will be doing this dressed up as the 118 118 characters seen on TV.All money will go straight to funding research into Huntington's Disease!And if you want to join in with the run then please feel free to do so!Friday 29th August, 12pm!! Cambridge Regional College, Kings Hedges Road!We are hoping to make as much money as possible which will go straight towards researching a cure for Huntington's Disease!If you'd like to sponsor me and my friends then please go to www.justgiving.com/saramcnaughtorwww.justgiving.com/rebeccajohnson118It's a fund-raising website which means the money will go straight to Huntington's disease and you can donate any time of the day!Please give generously!Thanks!!!!!!!!!!! :)Let me know if you want to run!!So far we have:Sara McNaughtRebecca JohnsonCassie De BloisLance McNaughtLloyd McNaughtAlso... Please invite Friends, Family, Work Buddies to join... the more people aware, the more money we can raise and hopefully out money towards finding a cure!!!
Contact Info
Email:
Website:
http://www.hda.org.uk
Office:
Cambridge
Location:
Cambridge, United Kingdom
Caiden's Cancer Page
This is my negative HD cousin's Lisa's cancer page, she made for little Caiden. I added it to my favourites. Relay for life for you. Two young to die. To young to get sick. The good news his Lisa and Rob, the brave man that steped in their, to look after that little boy. He was not his, but he always treated him like he was. Trevor and I saw him during remission. We thought there was no way it could take him.
The John Turner Memorial Walk
The John Turner Memorial Walk is set for Saturday, April 25 at 9:30 a.m. in Tilles Park, at McKnight and Litzsinger roads in Ladue.
Call the St. Louis Chapter of the Huntington's Disease Society of America at 314-647-4372 for more information about the walk and the disease. Or visit the web link on this page.
Tuesday, April 21, 2009
Hike
Trevor and I went for a walk today. It was beautiful. We took Lucky and went and did a hike. It was nice today. We had to go outside and enjoy the nice day. Tomorrow I get and do breakfast with Trevor and his Mom. She is moving. They are taking away the RN jobs at Swan Valley. They want to go cheap and get more LPN’s there. She was two months away from getting her pension too. This economy sucks. We got to stand through these tough times. We can fight through and make it alive. We can do it. We can get through this economic crisis. The world will not see another depression. We can stand strong. Arm in arm, and fight together. We need each other to be strong. Embrace the power. Embrace the change. We can get through this economic recession. Fight for our life. We are worth it.
Monday, April 20, 2009
RUN4HD
Trevor is laid off again for a couple of months. He will work once and a while. He is going to try and get computer work. Our rent goes down as his income goes lower. My disability goes up too. It won’t be enough to support us. Trevor is going to work with his Dad. The forestry industry here is being hit hard. We planted seeds at our communal garden today. I will look after the watering and weeding. We got lots of vegetables I now volunteer at the Gleaner’s on Wednesday. I will take the handi -bus there. We moved on the other side of the town. I can’t walk there. On the 28th is my last bowling. Rhythmic Gymnastics will end soon too. We are going to contact the Rec Center and find out how much it will cost. We can get a hold of the lions or the Legion to donate so we can get supplies and rent it. I know I can do this. I made a plan of what needs to happen.
Sunday, April 19, 2009
Staring HD walk
Hey..I am thinking of running an HD walk. I just mailed the Mayor here. I have tons of people here praying for us. There are also a JHD family here. I have met other people here who have HD. I was thinking June 20th.
HDSA Indiana Chapter
Happy Spring!
In the coming months there are many HD-related events. You can go to http://www.hdsaindiana.org/event.html for more information.
HDSA Indiana Chapter Gala Friday, May 15
Cool Cars for HD Sunday, May 17
HDSA National conference June 5-7, Phoenix AZ
Hotcakes for HD, Walk, and Greenfield Mills Mill Festival June19 & 20
John Klarer's 6th Annual Block & Field Party June 27th
Nancy Irwin Walk September 26
HDSA Indiana Conference October 3
Also, wanted to let you know that the Partnership for Prescription Assistance “Help is Here Express” bus will be traveling all around Indiana this week. In case you aren’t familiar with the big orange bus from the television commercials, the “Help is Here Express” is a mobile enrollment center that travels across the country to increase awareness of and boost enrollment in patient assistance programs. The bus is equipped with computer terminals and mobile telephones so patients can find out on the bus if they are eligible for help paying for their medicines.
Here is a list of the stops that the bus will be making this week.
Monday, April 20, 9:00 to 11:00 AM
Elkhart Community YMCA
200 E. Jackson Blvd.
Elkhart, Indiana 46516
Tuesday, April 21, 2:00 to 4:00 PM
Muncie Work One
201 E. Charles St.
Muncie, Indiana 47305
Wednesday, April 22, 9:00 to 11:00 AM
Wishard Memorial Hospital
1001 W. 10th Street
Indianapolis, Indiana 46202
Thursday, April 23, 9:00 to 11:00 AM
Terre Haute City Hall
17 Harding Avenue
Terre Haute, Indiana 47807
Friday, April 24, 10:00 AM to 12 Noon
Deaconess Hospital
600 Mary Street
Evansville, Indiana
Thanks!
www.hdsaindiana.org
866-488-0008
info@hdsaindiana.org
In the coming months there are many HD-related events. You can go to http://www.hdsaindiana.org/event.html for more information.
HDSA Indiana Chapter Gala Friday, May 15
Cool Cars for HD Sunday, May 17
HDSA National conference June 5-7, Phoenix AZ
Hotcakes for HD, Walk, and Greenfield Mills Mill Festival June19 & 20
John Klarer's 6th Annual Block & Field Party June 27th
Nancy Irwin Walk September 26
HDSA Indiana Conference October 3
Also, wanted to let you know that the Partnership for Prescription Assistance “Help is Here Express” bus will be traveling all around Indiana this week. In case you aren’t familiar with the big orange bus from the television commercials, the “Help is Here Express” is a mobile enrollment center that travels across the country to increase awareness of and boost enrollment in patient assistance programs. The bus is equipped with computer terminals and mobile telephones so patients can find out on the bus if they are eligible for help paying for their medicines.
Here is a list of the stops that the bus will be making this week.
Monday, April 20, 9:00 to 11:00 AM
Elkhart Community YMCA
200 E. Jackson Blvd.
Elkhart, Indiana 46516
Tuesday, April 21, 2:00 to 4:00 PM
Muncie Work One
201 E. Charles St.
Muncie, Indiana 47305
Wednesday, April 22, 9:00 to 11:00 AM
Wishard Memorial Hospital
1001 W. 10th Street
Indianapolis, Indiana 46202
Thursday, April 23, 9:00 to 11:00 AM
Terre Haute City Hall
17 Harding Avenue
Terre Haute, Indiana 47807
Friday, April 24, 10:00 AM to 12 Noon
Deaconess Hospital
600 Mary Street
Evansville, Indiana
Thanks!
www.hdsaindiana.org
866-488-0008
info@hdsaindiana.org
Bowling Tournament/Added a new Poem
My team came in third place. I added feel to my poetry page. I a ran out of space. Instead of asking my Dad for money. I am going to use a free server that has adds. this is an expensive hobby. I got my own flower garden and garden here. I have been healthy again. I love working with my flowers.
Saturday, April 18, 2009
Tiny Cells, Huge Possibilities
After eight years of ethical and political disagreement, a change in the White House may touch off an explosion of stem cell research at Johns Hopkins and elsewhere. But already, new and less-controversial advances in stem cell creation are making the search for cures even more promising.
Friday, April 17, 2009
Raise money through eBay and MissionFish
Raise money through eBay and MissionFish
Do you regularly sell items on eBay? If so, donating money to the HDA couldn’t be simpler! The HDA has registered with MissionFish who enable buyers and sellers on eBay to make charity donations with ease. Visit the eBay for Charity website to learn how you could make a donation to the HDA with each sale, and tell all of your fellow eBayer friends!
Make a donation online through
Do you regularly sell items on eBay? If so, donating money to the HDA couldn’t be simpler! The HDA has registered with MissionFish who enable buyers and sellers on eBay to make charity donations with ease. Visit the eBay for Charity website to learn how you could make a donation to the HDA with each sale, and tell all of your fellow eBayer friends!
Make a donation online through
UK HD Events
May 2009
12th - 14th
Certificated Course in HD - The HDA's inaugural residential certificated course is a unique opportunity to meet with fellow professionals in HD, to develop a deeper understanding of the illness, to share ideas and discuss the management of complex situations. On completion of the course, you will receive a certificate stating that you have undertaken training approved by the HDA to enhance your practice. Venue: Neurosupport Centre, Norton Street, Liverpool, L3 8LR - click here to download course content details and click here to download booking form
June 2009
8th - 14th
HD Awareness Week - A series of national and local events will take place during our Awareness Week this year. Please check our online calendar in the lead up to Awareness Week for more information.
9th
Palliative Care in Huntington’s Disease - Professional Study Day. To be held at The Kings Fund, 11-13 Cavendish Square, London, W1G 0AN - click here to download booking form
July/August 2009
17th - 19th31st - 2nd
HDA Activity Weekends
Avon Tyrrell Activity Centre, New ForestMepal Outdoor Centre, CambridgeshireLledar Hall Outdoor Education Centre, North Wales
Sign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years - click here to download booking form
October 2009
2nd - 4th
HDA Annual General Meeting and Family Conference weekend
The AGM and Family Conference will take place at the Park Inn Hotel, Telford, Shropshire. More information and a booking form will be sent out with our June 2009 newsletter and will be available to download from our website from mid-June onwards.
For further details contact:
Huntington's Disease Association
Neurosupport Centre, Liverpool, L3 8LR
Phone: 0151 298 3298
Fax: 0151 298 9440
info@hda.org.uk
12th - 14th
Certificated Course in HD - The HDA's inaugural residential certificated course is a unique opportunity to meet with fellow professionals in HD, to develop a deeper understanding of the illness, to share ideas and discuss the management of complex situations. On completion of the course, you will receive a certificate stating that you have undertaken training approved by the HDA to enhance your practice. Venue: Neurosupport Centre, Norton Street, Liverpool, L3 8LR - click here to download course content details and click here to download booking form
June 2009
8th - 14th
HD Awareness Week - A series of national and local events will take place during our Awareness Week this year. Please check our online calendar in the lead up to Awareness Week for more information.
9th
Palliative Care in Huntington’s Disease - Professional Study Day. To be held at The Kings Fund, 11-13 Cavendish Square, London, W1G 0AN - click here to download booking form
July/August 2009
17th - 19th31st - 2nd
HDA Activity Weekends
Avon Tyrrell Activity Centre, New ForestMepal Outdoor Centre, CambridgeshireLledar Hall Outdoor Education Centre, North Wales
Sign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years - click here to download booking form
October 2009
2nd - 4th
HDA Annual General Meeting and Family Conference weekend
The AGM and Family Conference will take place at the Park Inn Hotel, Telford, Shropshire. More information and a booking form will be sent out with our June 2009 newsletter and will be available to download from our website from mid-June onwards.
For further details contact:
Huntington's Disease Association
Neurosupport Centre, Liverpool, L3 8LR
Phone: 0151 298 3298
Fax: 0151 298 9440
info@hda.org.uk
Amarin’s Marketing Authorization Application For Amr101 To Treat Huntington’s Disease Accepted For Review By EMEA
Amarin’s Marketing Authorization Application For Amr101 To Treat Huntington’s Disease Accepted For Review By EMEA
Healthy Again
Gary sounded so depressed and lonely. At least Scott came to see him last week. I still call Gary every week. I had to tell him about all the cures o cheer him up. I am healthy again. Today really healthy. I so excited to go to my fist bowling tournament. After are a banquet and a dance. We are supposed to dress to impress. We are learning for our competition. It is going to be skipping rope. We did it perfect. We are getting better at that. My dementia is bad. I will talk about stuff and then pause, because I can’t remember. Get into the studies. They can’t help us unless they have people to test on. I started COHORT when I was 19 and I first found out. They help gauge and see how HD progresses. My family is good since we are different. That’s why I did it. I am hoping Dr. Suchkorsy will let me and Gary now about Creatine. They have a poor office there. I would not be surprised if it is LIKE COQ10. She never called us. Join the studies. Help us find a cure. Do your duty. We need to0 get into studies. How are we supposed to find a cure if no one enters?
GEMS OF TORONTO
I posted this three months ago. I am posting it again, because it is coming up soon.
Come to Architectural Gems of Toronto for HD event
Sunday May 3rd,
HD Walk
The Illinois TEAM HOPE-Walk For The Cure will take place for the 5th year in a row on Sunday, May 17, 2009, at beautiful Danada Farms in Wheaton, Illinois. If you live in the greater Chicagoland area including Wisconsin, Iowa (one of the far west suburbs of Chicago), Indiana, or Michigan, why not join us for a fun filled day of fellowship and fund raising for reasearch, family care and education. So far we have 6 out of state families joining us including two from Indiana, 2 from Wisconsin, 1 from Michigan and 1 from New York! Over the past 4 years, my bride, Susie, and I have co-chaired the Illinois walk and have helped to raise over $162,000. This year, we hope to go over the $200,000 mark.
For more information about the Illinois Walk,
please visit http://www.hdwalk.org/.
Peace and loveDave Hodgson
Illinois Chapter TEAM HOPE-Walk For A Curehttp://www.hdwalk.org/Ill.
Chapter-HDSA Web Pagehttp://www.hdsa-il.org/
Sponsor Dave & Susie's Walkhttp://www.firstgiving.com/DaveandSusie
COHORT
I have been apart of this study for five years now. It is good. I am doing it in Calgary.
There is a Huntington’s Disease Study actively recruiting participants in many areas, including your own. (Please see the list of sites and appropriate contact information at the end of this email). It is called COHORT. The following is a brief description of the study, the qualifications needed to participate, and contact information to learn more or to volunteer to participate in the study. COHORT Cooperative Huntington’s Observational Research Trial Study Purpose: COHORT is a long-term observational study that currently involves 42 North American and Australian HSG sites. The goal of COHORT is to collect clinical information to learn more about the natural history of HD and to correlate these findings with the genetic and hereditary information that are obtained from the analysis of blood DNA and family history patterns. This knowledge will contribute to a better understanding of potential treatments, and will assist in the planning of future research studies of experimental drugs aimed at postponing the onset or slowing the progression of HD. COHORT is recruiting both adults and children who have clinically diagnosed HD. In addition, the study is also recruiting any adults who are a part of an HD family. Individuals who choose to participate will have one study visit every year for as long as they are able and choose to participate.Locations: Forty-two Huntington Study Group (HSG) research centers in the U.S., Canada and Australia (see list and contact information below)Participants Needed: As Many as possibleIndividuals 18 years of age and older who have HD or tested positive for the HD gene; Parents, children and siblings of individuals who have HD or have tested positive for the HD gene; Grandparents and grandchildren of those individuals participating in COHORT who have HD or tested positive for the gene; Spouses of those individuals who have HD or tested positive for the gene; and HD family members who have tested negative for the HD gene – these individuals must have a family member who has HD or tested positive for the gene participating in COHORT to be included.For those under the age of 18, only individuals who have HD are eligible to participate.Trial Duration: OngoingTesting Procedures: • If you participate you will have a blood sample taken from a vein in your arm at each visit, and a urine sample taken at either the 2nd, 3rd or 4th yearly visit.• Your blood and urine will be stored at the Coriell Institute for Medical Research indefinitely. The blood will be frozen and stored for future research in Huntington’s Disease. The samples are kept with anonymous codes so there is no way they can be attributed to you by name, address or any other information You may decide at any time that you no longer want your samples stored and they will be destroyed immediately. • You will not receive the results of any of the tests performed in this study.• If you have participated in other HSG studies you will be asked if the information collected in that study may be linked to the information in the COHORT study. This is optional.For more details please call one of the participating sites and tell them you hard about the study from HDTrials.org:
COHORT Participating Site List (last updated February 4, 2009)
The United States of America Location Site Name Contact Person Telephone No. AL,
Birmingham University of Alabama at Birmingham Donna Pendley 205-996-7865 CA,
Los Angeles University of California Los Angeles Angelina Gratiano 310-206-2154 or or Sakena Patterson 310-794-1225 CA,
Sacramento University of California Davis Roxana Hupcey 916-734-6244 or or John Bautista 916-734-6280 CA,
San Diego University of California, San Diego Jody Goldstein 858-622-5854 CO,
Littleton Colorado Neurological Institute Dawn Miracle 303-783-4974 or or Diane Erickson 303-762-6674 CT,
Farmington University of Connecticut Mary Jane Fitzpatrick 860-679-4441 FL,
Miami University of Miami Monica Quesada 305-243-3647 FL, Tampa University of South
Florida Marcia McCall 813-974-6022 GA,
Atlanta Emory University Lisa Miyatake 404-728-6364 GA,
Augusta Medical College of Georgia Sherry Banks 706-721-2798 or Buff Dill 706-721-0619 IA,
Iowa City University of Iowa Anne Leserman 319-353-4307 IL,
Chicago Rush University Medical Center Jeana Jaglin 312-942-5003 IL,
Chicago University of Chicago Joan Young 773-834-1688 IN,
Indianapolis Indiana University School of Medicine Melissa Wesson 317-278-9545 KS,
Kansas City University of Kansas Janice Broyles 913-588-0683 or or Hilary Dubinsky 913-945-5019 KS,
Wichita Hereditary Neurological Disease Centre (HNDC) Greg Suter 316-721-9250 or 888-232-4632 MA,
Boston Boston University Melissa Diggin 617-638-7704 MA,
Boston Massachusetts General Hospital Alex Bender 617-724-2227 or or Keith Malarick 617-726-5486 MD,
Baltimore Johns Hopkins University Claire Welsh 410-955-1349 MD,
Baltimore University of Maryland School of Medicine Allison Mitchell 407-706-5386 MO,
St. Louis Washington University School of Medicine Stacey Barton 314-362-3471 MN,
Minneapolis Hennepin County Medical Center Dawn Radtke 612-873-2943 NC,
Durham Duke University Medical Center Peggy Perry-Trice 919-684-0865 or or Sarah Wyne 919-668-2837 NC,
Winston Salem Wake Forest University School of Medicine Christine O'Neill 336-716-8611 NY,
Albany Albany Medical College Sharon Evans 518-262-6611 NY,
New York Columbia University Ronda Clouse 212-305-2387 or or Paula Wesserman 212-305-4597 NY,
Rochester University of Rochester Amy Chesire 585-341-7519 OH, Cincinnati University of
Cincinnati Maureen Gartner 513-558-0018 or or Mary Beth Bialick 513-558-0018 OH,
Columbus Ohio State University Allison Seward 614-688-8672 PA,
Philadelphia University of Pennsylvania Lisa Altin 215-829-3582 PA,
Pittsburgh University of Pittsburgh Nancy Lucarelli 412-692-4659 TX,
Houston Baylor College of Medicine Alicia Palao 713-798-3974 TN,
Memphis University of Tennessee Joel Dennhardt 901-448-6180 VA,
Charlottesville University of Virginia Robert Davis 434-982-4351
Canada Location Site Name Contact Person Telephone No. Alberta, Calgary University of Calgary Mary Lou Klimek 403-210-8548
British Columbia, Vancouver University of British Columbia Allison Coleman 604-822-7739
Ontario, Markham The Centre for Addiction and Mental Health Alanna Sheinberg 905-472-
7082 EXT 230 or or Adam Singer 905-472-7082 EXT 229 Quebec, Montreal Hotel-Dieu Hospital-
CHIM Daniel Lamoureux 514-412-8000 EXT 26394
Thursday, April 16, 2009
Strength
We are people. We deserve to be treated like we are healthy. We should be considered healthy in all ways. HD is real. We are real people. We need real life. We make and live our life how we want. Make your life worth living everyday. Forgive yourself. You are no different. Don’t judge yourself. Don’t judge others. Everyone should be treated the way you treat yourself. HD does not change us. We change HD. We own HD. We rule it. We are in charge. Every one of us has the strength to fight. The strength is out of control.
Wednesday, April 15, 2009
Miracle
I spent the day in Cranbrook running form Government office to another one. Trevor went on EI when he got laid off. We did not know we had to close that account and so they did not give us disability. They did not give us it for two months now. They also have held back on two years of GST (tax money) from us. We never thought we would get anywhere. Today we went to a few Government offices. We are winning. We got GST today and our disability check. There is also a tax program here that can give us 5000 dollars every year. We are set for that too. See if you believe good things can happen. Are great and great things will happen? This is good. We frequented the food bank. We were going to go back and now we have this money it is great. My home care Nurse Julie, gives me free boost and meals on wheels. Julie helped us get disability. We have to thank her. The Nurses would come and there was no food to make meals with.She does not want one of her clients to starve. Miracles do happen. They happened today. We did not think we would get anything. Keep trying and you will win. Believe in miracles. Believe in the beauty of what is possible. A miracle happened.
Tuesday, April 14, 2009
Bowling
We at wearehd.org are trying to help out those HD bikers. Let’s open our homes and our hearts. We need this to happen. We need research money to help us find cures. Help out and give them a home. I would love too. You are lucky. I wish they did this in Canada. I did so well at bowling. 2 spares and I got a lot of getting down all the pins. The tournament, buffet, and dance are on Saturday. The tournament starts at 2:00. I think I will do well. I have gotten way better, since I first got there. Trevor will be there to cheer me on. Lately I have been really tired. It has made my HD worse. The key is sleep. You have to get a perfect sleep. Last night I got that drowning feeling again. I also could not stop drooling, while lying in bed. I have not had that drooling problem like that. I have been seeing aliens and seeing ghosts. I was in the car and Trevor was gone. I got scared. I thought I heard ghosts. I saw aliens outside there. I am having trouble typing and spelling. Thank god I have spell check. My dementia is getting worse. I get confused and forget things. I also say things that don’t make sense and now I repeat words. Trevor told me about that one. I had no idea about the words. I get sicker at night still. Accept HD. This is real. We have it. There is nothing we can do to change. Don’t hide under the sand. I never live that way. Hiding makes it worse. Accept it. It will not go away. The harder you push. The unhappier your life becomes. Make your life worth living. Stop hiding and it will. Live and it the world now. Be proud to have HD. Be happy with HD. Be hopeful with HD.
Modification Of Mutant Huntingtin Protein Increases Its Clearance From Brain Cells
A new study has identified a potential strategy for removing the abnormal protein that causes Huntington's disease (HD) from brain cells, which could slow the progression of the devastating neurological disorder. In the April 3 issue of Cell, a team of researchers from the MassGeneral Institute for Neurodegenerative Disease (MGH-MIND) describes how an alteration to the mutated form of the huntingtin protein appears to accelerate its breakdown and removal through normal cellular processes.
Monday, April 13, 2009
Bucket List
I am back. I had so much fun in Kelowna. Trevor took me to stay with his Uncle and Aunt there. We had a great time. It was a six hour drive. It was a beautiful drive. It s in the British Columbia desert. I saw the most beautiful lake on the way there, Christina Lake. You could see the mountain in it. We got to see the beach and lake in Kelowna. We got stay with his Uncle and Aunt. They had a cute Shitizu called Wicket. We got to bring Lucky. He loves it. They went to Easter Church on Sunday, I sadly could not wake in time. The travelling and all the running around wore me out. They thought it would. We got to see Trevor’s friends there. He used to live there. He knew a lot of people there. Alice was over today. We went for a dog walk with Princess and Lucky. We watched the bucket list today. It is great for us to learn from. Live your life full tilt. Live your life like it is the last breath. It might be your last breath. How do you want to remember your life? I want o remember it as I lived my life full. You live your life full too. Never forget all of the fun you can leave. Live like you are dying. Even if you are not. Just live and love life. Enjoy the sunshine. Enjoy your life. Enjoy everything. Make your life worth living. Make a bucket list. I have one. Make one. What do you want to do when your life is on the line? You have control of what your future holds. Take control. Don’t let go.
Responding to Stressful Events: Self-Care for Caregivers
Natural or human-caused disasters such as earthquakes, health emergencies, terrorist attacks or acts of war can engage caregivers (physicians, psychologists, social workers, nurses, psychiatrists, teachers, counsellors, and other health workers) in working long hours helping people of all ages to understand and manage the many reactions, feelings and challenges triggered by these stressful circumstances.
HD Bikers looking for places to stay
I hope everyone is having a peaceful Easter, surround by those you love! Below is an update from Marie Nemec on her annual bike ride to an HDSA national convention to bring awareness to Huntington's Disease. Marie and Charlotte are two fantastic ladies who, although they don't have HD in their families, have not only raised almost $500,000.00 for HDSA's research, but have pedaled their bikes over 17,000 miles creating awareness all the way! If you are unable to help them with a small donation this year, please check out their itinerary, they're always looking for people, especially from HD families, to meet them along the way or bike part of the way with them. If you have any friends or families living in those cities and states they'll be passing through, please forwards this message to them!Itinerary: http://www.bikefort hecure.org/ 2009/2009- Itinerary. htm
Sunday, April 12, 2009
bikeforthecure
There is a link to a fundraising page, too
(www.firstgiving.com/bikeforcure) There is still time to be a ride sponsor and have a name on the ride t-shirt (and get a free t-shirt on the Early Bird Special). All the info is on the
http://www.bikeforthecure.org/ website. Hope to hear from many as we do our best to raise awareness and funds for research and family services.
The ride starts in just five weeks, from Grand Junction CO to Phoenix AZ via the Four Corners.
Thursday, April 9, 2009
Cognitive Therapy Improves Symptoms of Anxiety Disorder Common in Older Adults, Study Shows
I have taken some of these CBT skills form my mental health worker. They work great. The participants had an average age of 67. They were evaluated at the start of the study, after the three months of therapy, and several times during the next year. The participants with the cognitive behavioral therapy improved significantly at three months, compared with the other group, on several measures, including worry severity, depressive symptoms, and general mental health. However, in another key measure, severity of anxiety, there was no difference between the two groups.
Wednesday, April 8, 2009
Gay Holocaust
There is a Gay Holocaust happening in Iraq. They are being slaughtered by the Shiite leader, who is a thorn in the States side. Their families sell them out and they get shot or set on fire. Just like the JEWS from HITLER. It breaks my heart. I never wanted another Hitler. I never ever thought war is good. Those guys are like Hitler, by slaughtering those Gays. I just can’t sit and do nothing when it comes to human rights. The Americans were right. I am shocked to see that now.
-support-iraqs-gays-lesbians-20090405/
Ways to donate. Help the underground railroad.
In reality, the movement to protect LGBT Iraqi's is a one-man operation. Ali Hili runs a site called Iraqi LGBT, which serves as the West's doorway to his efforts to save the lives of his countrymen and women. Since 2006, Hili has coordinated with outside groups and sympathizers in Iraq to set-up a series of safe houses to help gay and lesbian Iraqi's escape the country. Hili told Pink News UK earlier this year:
"We have also assisted people to escape from Iraq to neighbouring countries, where we have established resettlement projects. Our efforts have got gay refugees registered with the United Nations High Commissioner for Refugees (UNHCR), and we've already moved some of them a third safer country, in Europe or North America. These lucky ones are now beginning to rebuild their lives"
Money is a problem for the group. Three of the safe houses in Baghdad closed last year due to a lack of funds and as violence against gays and lesbians increase, so do the demands put on the group.
The site's fundraising efforts are modest. The site asks:
"Donate to our PayPal Account : iraqilgbt@yahoo.co.uk
Or make cheque payable to (IRAQI LGBT) send it to our address:
Iraqi Lgbt
22 Notting Hill Gate
Unit 111
London,W11 3JE
United Kingdom
Friends can send Donations to IRAQI LGBT: The immediate urgent priority is to Support and Donate Money to LGBT activists in Iraq in order to assist their efforts to help other Lesbians, Gay, Bisexuals and Trans gender Iraqi's facing death, persecution and systematic Targeting by the Iraqi Police and Badr and Sadr Militia and to raise awareness about the wave of homophobic murders in Iraq to the outside world. Funds raised will also help provide LGBTs under threat of killing with refuge in the safer parts of Iraq (including safe houses, food, electricity, medical help) and assist efforts help them seek refuge in neighboring countries."
I also got a documentary on the holocaust.
http://www.youtube.com/watch?v=5ajSopj95CU&eurl=http%3A%2F%2Fwww%2Equeerty%2Ecom%2Famericas%2Dlgbt%2Dcommunity%2Dmust%2Dsupport%2Diraqs%2Dgays%2Dlesbians%2D20090405%2F&feature=player_embedded
Driver safety: Top 7 tips for older drivers
Driving can sometimes be challenging for older adults. Follow these driver safety tips, from taking good care of yourself to planning ahead and updating your skills.
http://www.mayoclinic.com/health/senior-health/HA00042
http://www.mayoclinic.com/health/senior-health/HA00042
Tuesday, April 7, 2009
Easter Surprise
I got two spares while bowling today. We are all psyched for the tournament on April 28th. I am still healthy. Little chorea, but not much. Today we did not go to the Gleaner’s. The toy section was not running. On Thursday I get my Easter surprise. I have no idea what it is. I think it might be a trip or something. Trevor told me that we would miss rythmitic gymnastics on Thursday. I am so excited. I can’t wait to find out what it is. Enjoy you life. Don’t take it for granted. Don’t take your health for granted. Don’t take each other for granted. Live for now. Don’t think of then, now. See the future waving at you, to come along. Go on life’s journey. Travel and enjoy. Live and enjoy. Take your life, make it happen. Take your life. Don’t let go. It is your life. Your future. Have fun. Do not let HD stand in the way. Life can be fun. Have fun. Let’s of fun. Enjoy your life. It is the key too living. Fun and laughter. More fun and laughter. It is the only way to live. Down in the dumps is never good.
Monday, April 6, 2009
Easter Surprise
I have an Easter surprise coming up this weekend. I know it is something huge. I have no idea what it is. I am so excited. The big surprise was a scooter. Now I have my own wheels. We moved across town. Special Olympics’ is a far walk away. I am planning on riding it there and back. Sometimes my legs kill me. Even though I am getting healthier, some of that pain is still there. He paid for me to get my hair cut and dyed. That was another birthday surprise. I have been struggling with depression and anxiety. It has been going on for 5 days now. We just have to see the positive sun coming out of the grey darkness. Never stay in the dark. Always try to stay above. Don’t drown in a river of despair. Float with me. Stay and fight every day with me. Every day is a fight to wake up. Every day is a fight to stay alive Don’t give up. Fight with m. We are not alone. We have each other to lean on.
Multiple CT Scans Raise Cancer Risk
As many as 7% of patients treated at a large U.S. hospital received enough radiation exposure from repeated CT scans to increase their cancer risk, according to a new study.
Friday, April 3, 2009
Pathways to Inclusion
Most communities have a number of resources that can offer support to caregivers. Sometimes it just takes a little creativity and research to track them down. In the book, Building Communities From The Inside Out, John Kretzmann and John McKnight suggest ways to locate the assets, skills and capacities found within each community.
Computer Fixing
I went put to dinner with Trevor's family.My computer is wonky. We are reformatting this weekend. The cures are real. They are around us. They are real. We see them every day. Just look up and never look down again. Fight to get there. Fight for hope. Fight for your future, Fight for inner peace that never leaves. Concentrate on life. Concentrate on living. Live you life. Never let HD get in the way. Never let it bother you. We are above fear now. Above it all here. Fear is not even a word that we should own up too.
How To Find The Help You Need
How to Find the Help You NeedCaregiver Support Fact Sheet
Not only is the diagnosis of Huntington’s disease devastating in itself, but the progression of the disease and the changes it brings can be difficult for both the individual and family members. The emotional strain is just one of many challenges but caregivers should know that they don’t have to struggle alone. There are many resources available that provide all types of support, and it’s important to take advantage of any offers of help.Informal networksDon’t hesitate to accept help from family, friends, co-workers and neighbours, who can visit, offer companionship and support for social and recreational outings, help with household chores, provide transportation to appointments or just be there to listen and support.Ask for help. People may not always offer their time but are usually more than willing to assist when asked.Community groups such as neighbourhood clubs, professional associations and churches can help families trying to cope with HD. Services may include children’s camps, family retreats, home visiting programs, weekly discussion groups and recreational activities.Health and social servicesYour family doctor is an important resource. Regular visits not only ensure good general health, but also help to create a close relationship between doctor and patient. Your doctor may be able to make a referral to a community resource or suggest a service such as occupational therapy or genetic counselling.Home care programs are often available through the provincial health care system. These services, which can include nursing, physiotherapy, social work and personal care, can enable people to live at home as long as possible, delaying a move to a long-term care facility and taking some of the burden off of family caregivers. Private home care agencies often provide services similar to the government home care programs. This may be an option worth considering, particularly in times of emergency, short notice or as a supplement to public services.Many communities offer an extensive range of support services. Adult day centres, Meals on Wheels, transportation services, financial assistance, home and yard maintenance, individual and family counselling, speech and swallowing therapy and emergency response systems are some of the programs offered in many communities, but additional services may also be available.Finding someone who can help you navigate through the vast array of services available in Canada can also be helpful. For those enrolled in a provincial home care program, the case manager or case coordinator can assist in choosing the right services for each individual. The Huntington Society of Canada employs trained social workers in its Resource Centres and IFS programs. These are ideal people to turn to when looking for information, education and assistance in locating community services. Participating in a support group is another excellent way to gain first-hand advice and recommendations. There’s no need to feel alone when a friend or family member is diagnosed with HD. Reaching out to the people and services in your community can make a world of difference.Adapted from the HD Fact Sheet: How to Find the Help You Need.
Not only is the diagnosis of Huntington’s disease devastating in itself, but the progression of the disease and the changes it brings can be difficult for both the individual and family members. The emotional strain is just one of many challenges but caregivers should know that they don’t have to struggle alone. There are many resources available that provide all types of support, and it’s important to take advantage of any offers of help.Informal networksDon’t hesitate to accept help from family, friends, co-workers and neighbours, who can visit, offer companionship and support for social and recreational outings, help with household chores, provide transportation to appointments or just be there to listen and support.Ask for help. People may not always offer their time but are usually more than willing to assist when asked.Community groups such as neighbourhood clubs, professional associations and churches can help families trying to cope with HD. Services may include children’s camps, family retreats, home visiting programs, weekly discussion groups and recreational activities.Health and social servicesYour family doctor is an important resource. Regular visits not only ensure good general health, but also help to create a close relationship between doctor and patient. Your doctor may be able to make a referral to a community resource or suggest a service such as occupational therapy or genetic counselling.Home care programs are often available through the provincial health care system. These services, which can include nursing, physiotherapy, social work and personal care, can enable people to live at home as long as possible, delaying a move to a long-term care facility and taking some of the burden off of family caregivers. Private home care agencies often provide services similar to the government home care programs. This may be an option worth considering, particularly in times of emergency, short notice or as a supplement to public services.Many communities offer an extensive range of support services. Adult day centres, Meals on Wheels, transportation services, financial assistance, home and yard maintenance, individual and family counselling, speech and swallowing therapy and emergency response systems are some of the programs offered in many communities, but additional services may also be available.Finding someone who can help you navigate through the vast array of services available in Canada can also be helpful. For those enrolled in a provincial home care program, the case manager or case coordinator can assist in choosing the right services for each individual. The Huntington Society of Canada employs trained social workers in its Resource Centres and IFS programs. These are ideal people to turn to when looking for information, education and assistance in locating community services. Participating in a support group is another excellent way to gain first-hand advice and recommendations. There’s no need to feel alone when a friend or family member is diagnosed with HD. Reaching out to the people and services in your community can make a world of difference.Adapted from the HD Fact Sheet: How to Find the Help You Need.
Thursday, April 2, 2009
Bowling Tournament
I am joining a Special Olympics Tournament on April 18th. There is a dinner and a dance afterwards. I am so excited to make it in there. I can’t believe it. I am way better then when I first started. I never bowled before. I am volunteering at the Gleaners on Tuesday now. Gerry moved over there. She is my ride. I moved to that day. I did not go today. I had fun at Rhythmic Gymnastics. We all got to show off three things that we learned to an audience. Trevor was there. We are going to my Special Friend Naomi’s place. On Tuesday they are having a meeting to see who does Relay For Life this year. Live your life. Love you life. Life has ups and downs. We just have to fight those downs. Fight for your right to be happy. Fight every day. Fight like this is your life on the line. It means a lot to be happy. We have to constantly fight to get there. It is not easy it is a hard road. We can all do it.
Gladstone Institutes Establishes Taube-Koret Center For Huntington's Disease Research,
Gladstone Institutes Establishes Taube-Koret Center For Huntington's Disease Research, Aims To Cure Huntington's By 2020
Count down for the cure. Hope is now. Futures are now healed. Lives are ow healed.
http://www.medicalnewstoday.com/articles/144184.php
http://www.medicalnewstoday.com/articles/144184.php
Spotlight: HDSA Advocacy Day on the Hill
On Thursday, March 26th, something inspiring and effective happened. A group of advocates, all touched in significant ways by HD, made a trip to Capitol Hill to share their personal stories with their Representatives and ask for their co-sponsorship of H.R. 678, the Huntington's Disease Parity Act of 2009.
Mothers, husbands, brothers, caregivers, at-risk, gene positive - this group came together from districts across Virginia to educate Congress about HD and why this bill is so important to families across the country just like theirs who are struggling to obtain benefits at a time when they need them the most.
The group, led by Tim O'Neil, M.D. conducted 10 office visits throughout the day which we already believe will result in at least an additional 3 co-sponsorships. HDSA would like to personally thank the following advocates for taking the time to share a part of their lives with their elected officials, to educate them about the HD community and what life living with this disease is like, and for bringing us all one step closer to seeing this very much needed change realized.
Mothers, husbands, brothers, caregivers, at-risk, gene positive - this group came together from districts across Virginia to educate Congress about HD and why this bill is so important to families across the country just like theirs who are struggling to obtain benefits at a time when they need them the most.
The group, led by Tim O'Neil, M.D. conducted 10 office visits throughout the day which we already believe will result in at least an additional 3 co-sponsorships. HDSA would like to personally thank the following advocates for taking the time to share a part of their lives with their elected officials, to educate them about the HD community and what life living with this disease is like, and for bringing us all one step closer to seeing this very much needed change realized.
Wednesday, April 1, 2009
Healthy
I am getting so healthy. My chorea is gone. I no longer have problems eating. I no longer trip or fall. In 17 days my WII FIT has been the difference. My balance is 91 percent. My age is down to 22 today. I am younger now then my actual age on that. It is so amazing. I never thought I would get results like this, as soon as I did. When I started my balance was 0. My WII FIT age was 59, when I first started. Trevor is a lot better. Forgive yourself for the things you can’t control. Forgive others. Life is no time for hatred. Forgive us. We are not HD. We are always, first and foremost people. We have feelings. We have fears. We feel everything. Help us feel like we are loved love unconditionally. My Trevor will always love me. Everyone should remember we are always ourselves. We will always be there. Remember us.
Run for HD
Run for HD 6/28/2009 6/28/2009 8:30AM Sunnybrook Park, Toronto, ON
5k fun run and 1k/5k walk
When: Sunday, June 28th, 2009.
Where: Sunnybrook Park, Toronto (near Leslie Street and Eglinton Avenue East, not far from DVP/404 and 401 highways)
Schedule: 8:30-9:30am arrival 9:50 opening ceremonies and warm-up 10:00 5k run start 10:05 1k and 5k walk start 11:30 announcements and prize draw
Join us for a walk in the park or a fun run.
Many volunteer opportunities.
To register please go to http://www.events.runningroom.com/site/?raceId=4227
Contact: Tim Irwin 647-238-6294 or run@hdtoronto.org
To download the brochure and pledge sheet please visit http://www.huntingtonsociety.ca/english/content/?page=191 Stay tuned for more details!
5k fun run and 1k/5k walk
When: Sunday, June 28th, 2009.
Where: Sunnybrook Park, Toronto (near Leslie Street and Eglinton Avenue East, not far from DVP/404 and 401 highways)
Schedule: 8:30-9:30am arrival 9:50 opening ceremonies and warm-up 10:00 5k run start 10:05 1k and 5k walk start 11:30 announcements and prize draw
Join us for a walk in the park or a fun run.
Many volunteer opportunities.
To register please go to http://www.events.runningroom.com/site/?raceId=4227
Contact: Tim Irwin 647-238-6294 or run@hdtoronto.org
To download the brochure and pledge sheet please visit http://www.huntingtonsociety.ca/english/content/?page=191 Stay tuned for more details!
Russell Historical Walk
Russell Historical Walk
5/30/2009
5/30/2009
1:00PM
Russell, ON
Raindate: May 311pm & 2pm Walk starts at Russell Public SchoolHouse tours, scavenger hunt, garage sale, tea room, silent auction $15 per person or $25 per family For more information contact Joanne at (613) 445-0913
Ottawa Race Weekend
Ottawa Race Weekend
5/23/2009
5/23/2009
9:00AM
Ottawa, ON
Marathon, Half-Marathon, 10K, 5K, 2KRegister online at www.runottawa.ca and select the Huntington Society of Canada as the “Endorsed Charity” for your pledges.
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