DNA swap could cure inherited diseases

The prospect of a human baby with three biological parents has moved closer after scientists created monkeys using a technique that one day could stop children from inheriting severe genetic diseases.

The birth of four healthy macaque monkeys in the US offers the strongest evidence yet that DNA can be transplanted safely from one egg to another to correct genetic defects that damage health.

The successful experiment in a close human relative suggests that it should be possible within a few years to use the method to help women who carry genetic disorders to avoid passing them to their children.

It should allow scientists to replace faulty “cellular batteries” called mitochondria, which affect about 1 in 6,500 births. While most mitochondria defects have mild effects, some can trigger severe brain, heart, muscle and liver conditions, as well as cancer, diabetes, blindness and deafness.

http://www.timesonline.co.uk/tol/news/science/article6811080.ece

So, What did they say? When you asked them "Why Not?" More Info

So, What did they say?
When you asked them "Why Not?"

More Info

Earlier this month we asked you to contact your Congress Members during the August Recess to ask "why not?" if they haven't yet co-sponsored HR 678, The Huntington's Disease Parity Act of 2009. So, what did they say?? Email us with your answer at advocacy@hdsa.org.

If you haven't yet contacted your Representative, do so today! All Representatives are in their home offices until September 4th so take 5 minutes today to make the call! You can start by clicking here (or visit capwiz.com/hdsa) to find your district office's contact information. From that site you can also send an email to your Representative's office urging their support.

Tell the staff person that The Huntington's Disease Parity Act of 2009 is very important to you and that you would like a few minutes to speak with your Representative or the Health Aide about it. All the materials you'll need to prepare can be found at http://capwiz.com/hdsa/utr/1/GSIXLDXUMR/HIBNLDYOUL/3852025301.

If you're nervous, have questions, or are interested in getting more involved in HDSA Advocacy, please call us for help at (202) 288-5124.

Help, Hope, and Emotional Healing for the Terminally

When you're facing a terminal illness, the emotional pain can seem unbearable. Besides coping with your own feelings, you may also worry about how your family and friends are doing, and you may feel uncomfortable talking to them about what you're going through. But there are ways for you to focus on healing emotionally even in the worst moments, and you don't have to go through this alone.

“Often, family members and best friends are in so much pain that they cannot be of help to you, even though they are trying their best,” says Vega A. Lalire, PhD, a clinical psychologist practice with Lucas Associates in Goshen, NY. “Friends are so important; visit with all your friends: in person, via e-mail, and on the phone. Talk with everyone and you will find someone who can deal with your terminal illness without avoiding it or being insensitive.”

What is surprising is that it is often not your best friend or family member who can help you with the most with your feelings, but someone with whom you are only somewhat close.
“The friend should be someone who can empathize with your complaints and your pain, and be a good listener, but then help you turn toward the positives in life, and enjoy talking with you about other topics,” Lalire says.

Terminal Illness and Emotional Healing: Where to Turn to for Support
Support is crucial during this very difficult time. You need to have someone to talk to, but not just anyone can help you along this emotional journey.

Consider these tips before turning to a friend for help:

be flexible about what you want to discuss.

If you want to review your life, your friend should be willing to listen as you talk about all of your accomplishments, your childhood, and the important people in your life.

You need a person who will remind you of the good things you will be leaving behind: You will live on in the memories of others and even their behaviors.

“Your friend should be a person who is generally positive and can shift your conversation to silly and fun things," Lalire says. "You can complain together about politics, the economy, or whatever.”

Choose someone who can talk about death and what will happen after your death. Understand that not everyone can handle this conversation, but don’t take it personally. It's their problem, not yours.

If you have decided that it is time to die before your pain gets worse, your friend should be comfortable with that and supportive of your decision.

If you are unable to find a person who meets some of the above criteria, then you need to find a good counselor or psychotherapist to talk with to assist you with your emotional healing. Ask your doctor to give you a referral.

Terminal Illness and Emotional Healing: Keep Living

For as long as you are physically capable, continue doing whatever you have done in the past. Keep living.

“When you are depressed, call someone, whether a friend or a psychologist, who accepts your situation and can get you to focus on the positives,” Lalire says.

It’s also important that you get out and see people. If you're physically able, a good way to do that is through volunteering. Research shows that helping others is a great way to boost your emotional and psychological health and enhance the healing process. It also helps you to see that there are other people in similar situations, and can take your focus off of yourself.

You should also consider joining a support group of people who have the same or a similar condition: Being with others who understand how you feel is very helpful and healing. You have much to offer others through sharing your experiences and feelings. Talk to your doctor to find out about support groups in your area.

Things to Consider

Lalire says that it is okay to take medication to help you cope with your terminal illness.
“Don’t forget about antidepressants,” Lalire says. “They can be very helpful and help you make the most of the time that you have left.”

Also, if you are in severe physical pain, you deserve to be comfortable.

Talk to your doctor about what can be done to ease the pain caused by your illness. If you don't get the help you need controlling your pain, find another doctor -- perhaps a pain specialist -- who will work with you to ease your suffering.

Lost Internet

We are switching Internet hosts. I will not have Internet at home, until the 4th. I am using the Library Comp. They are closed on Monday. I will not be able to blog. I will come here every week day, and blog, for you all. I went to see my family Doc. I still have my bladder infection. He put me on different anti-biotics. I am on them for 7 days. I am hoping it goes away. I have been really sick, in the past thee days. My hands are twitchy, I have brain fog, my chorea is so bad, my hands are trembling, I had a lot of brain fog, and I also got confused. I got lost at our DR's office. I got lost going to get water, for Trevor, I get lost when I do aerobics. Trevor is having hip problems. He lost some of the muscle, on his hip. He is taking it easy. The Doctor, wanted him to get a hip pillow. Trevor always has worked physical jobs. Even as life is hard. There is always, something to be thankful for. Be thankful for your life. Be thankful, for your family. Be thankful for friends. We are real people. We deserve, to be treat us this way. Love the people that accept us. for who we are.

Bladder Infection

I have to go to my family Doctor, on the 28th. He wants to give me a urine test, to see if I still have it. The past two days I have been feeling scared at night. Today I am having a bad HD day. I am really tired, drooling, dancing, hard time typing. I have a bad time with my dementia. I also fell twice. I am still catching myself. I have not gotten hurt, because of that. I have never got seriously hurt from my falls. I know one time, my Mom cracked her head. It was scary. I accept the fact that I have HD. We are all getting sicker. The breakthroughs today were amazing. I think soon, there will be something, tangible. The hope flies, to the sky's. Celebrate with me. Celebrate our healthy, HD free life. The generations will stop. We can have our lives back. The suffering, well be a lesson and not a burden. The hope grows, more and more, everyday. We can be cured. We can get HD free. never lose your hope. Keep the faith.

Mesenchymal stem cells repair damage in an animal model

Mesenchymal stem cells repair damage in an animal model

Stem cells are huge breakthroughs, everyday. I totally want to do them. I think they can cure us.

Researchers at Tel Aviv University have introduced and tracked mesenchymal stem cells as they migrate into the damaged areas of the brain in a neurotoxin rat model of Huntington's Disease.

Mesenchymal stem cells are multi-potent cells that can develop into a variety of cell types. They are mainly found in the bone marrow. The researchers, led by Dr. Yoram Cohen, attached magnetic iron oxide nanoparticles to the stem cells so they could be tracked using the the in-vivo MRI at the Strauss Centre for Computational Neuro-Imaging. The stem cells were then injected in to the brains of rats which had been given a neurotoxin which mimics the damage seen in Huntington's Disease.

Dr.Cohen and colleagues were able watch the stem cells migrating towards the diseased area of the brain in real time. "Cells that go toward a certain position that needs to be rescued are the best indirect proof that they are live and viable. If they can migrate towards the target, they are alive and can read chemical signaling," explains Dr. Cohen.

He describes the significance of the work. "We have been able to prove that these stem cells travel within the brain, and only travel where they are needed. They read the chemical signaling of the tissue, which indicate areas of stress. And then they go and try to repair the situation."
Mesenchymal stem cells may become an important therapy for Huntington's Disease, other neurodegenerative diseases, and stroke. A clinical trial is planned for HD patients and is expected tot start in about 18 months.

In April, Dr. Jan Nolta of the University of California, Davis, received a $2.75 million translational grant from The California Insitute for Regernerative Medicine (CIRM). The goal of CIRM is to fund promising projects which will translate basic research into stem cells into a cure in the clinic. Dr. Nolta and colleague Dr. Vickie Wheeler will use mesenchymal stem cells into which short interfering RNA has been inserted in a Phase I clinical trial. As the stem cells move through the affected areas of the brain, they will merge with and repair damaged brain cells and also reduce levels of the HD protein. Mesenchymal stem cells have not been associated with tumors and appear to be immunologically privileged.

'Keep your fingers crossed': Isis makes progress on HD drug

The cure is here. It is now. Countdown for the cure. It will shut down soon. We will

have it. The cure is here. The cure is now.

'Keep your fingers crossed': Isis makes progress on HD drug

http://www.hdsasandiego.org/aev-41.aspx

HD social security bill gains supporters

HD social security bill gains supporters

26 new supporters. We are getting there.

http://www.hdsasandiego.org/aev-44.aspx

Sen. Ted Kennedy Dies of Brain Cancer

He tried as a Senator, too make a big difference. He was pro Stem Cell. He was sick, with Cancer, came back to vote for Medicad. He tried to help the American people as much as he could. No one could replace his fight for our rights, as people.

http://www.webmd.com/cancer/brain-cancer/news/20090826/sen-ted-kennedy-dies-of-brain-cancer?ecd=wnl_day_082609

Denial

Denial is a place of safety for people to hide. Sometimes, with HD, people don't want to look it with eyes open. They just can't be real. This is one of the hardest disease's for people,to see it exist. The family, the patient, all want to hide. That is why it has the highest suicide rates out of any genetic illness. Or people cope in negative ways. We should never let denial take over our life. You have to open those eyes. Get ride of that fear. You can't live with that much pain, that your being hurts. Accept HD. We have HD. It is here. It is part of us. We have to mindful of HD. Why live a life in pain, when you can reach for the light? It is better in the sun. Not with fear carrying you down. Accept HD, then you can live. If you never accept, you live a life, that will never be happy. My family never was in denial. I new at grade 5, that I was at risk. It is not fun to be lifeless, with no dreams. Start living. Start making goals. Start living. Start dreaming. Make your dreams happen. Only we can control our life. Only we, can make it worth while. Fight denial. Take about it. Talk to anyone, that well listen. Don't keep HD a secret. It will ease your mind to get things out. Everyone and there dog, knows I have HD.

An HD Documentry from a WEAREHD Friend

Last week I interviewed a couple of medical professionals at University of Virginia and had them give a definition of what HD is and how it affects people. I have a doctor at Johns Hopkins who said that he will be happy to offer some insight to the disease on camera. The trailer is being recut to reveal the narrative of how the sport of lawn mower racing is being use in the war against HD. The film's trailer has been selected by Docs in Progress for their September public showcase of documentary film trailers.

The project's web site is at

http://www.mowermovie.com/

If you want to become a fan of the project you should be able to get to the Facebook page here: http://www.facebook.com/pages/On-Your-Mark-Get-Set-MOW/148970306631

Bladder Infection

I never got a catheter. I was lucky. I caught the Bladder Infection in time. It was early enough that, they just gave me Anti-boitics. My bladder scan showed 64mls. Not enough to need to be drained. I was lucky. I hate catheder's. Last time it was full, 430mls. If you do not remove the urine, then you can get Kidney damage. I did not want that. My nerve in my bladder does not work. HD cut them off in the bladder. It fills them with Urine. I did end having a good weekend. Trevor and I had a blast, this weekend. We were supposed to babysit, on Saturday, but they did not need them. We went, to the lake again. We went rafting. Trevor also taught me to swim. I drowned when I was 5. Trevor tries to get me to swim. We got real progress yesterday. I do find my arms get tired, I can't keep myself swimming for long . With HD, I don't have the strength or the stamina. When I was healthy I could walk for hours non stop. Now, I can't do it as long. I used to have no problem doing aerobics too. It is important to keep going. Exercise. Don't ever give up. Don't let HD, take your body away. My Dad, told me never, to give up exercising. Gary does not give up either. Never give in. Always fight. Always stay in shape. Don't give in for one second. If you do, you lose everything.

American Sept HD Events

ARKANSAS
Saturday, September 12, 2009
Team Hope Walk- Ft. Smith Arkansas
Huntington’s Disease Society of America & the Fort Smith Support Group 8th Annual Walk of Hope

in memory of Linda Sorrels & Francis Otts

(Walk for donations or donate to a walker!)


Creekmore Park

3301 South M Street
Fort Smith, Arkansas
(Walk 3 laps around Park -Approximately 1 3/4 miles)


Saturday, September 12, 2009


Start Time: 9:00 a.m.


9:00a.m.

For More Information Contact:
Pat Valley - 479-785-5209
Sandee Farley - 479-474-2221
John Furness - 479-996-4018


Donations accepted online at: http://www.firstgiving.com/HDSATeamHope



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CALIFORNIA
Saturday, September 19, 2009
Team Hope Walk- Greater Los Angeles Chapter
Team Hope Walk

Greater Los Angeles

September 19, 2009

9AM

CBS Radford

Studio City, CA

To register please go to

www.firstgiving.com/hdsateamhope








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Saturday, September 26, 2009
Team Hope Walk- Orange County Affiliate
Team Hope Walk

Orange County, CA

September 26, 2009

8am-12pm

UC Irvine

to register please go to:

www.firstgiving.com/hdsateamhope






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COLORADO
Thursday, September 10, 2009
Celebration of Hope- Rocky Mt. Chapter
Please Join US!!!

To Celebrate the 10 year anniversary of our Center of Excellence

What: The 11th annual Celebration of Hope Gala
When: Thursday, September 10, 2009

VIP Reception- 6:30- Palazzo Terrace

Cocktails- 7:30pm- Madden Museum

Gourmet Chef Stations- 8:00pm- Grand Lobby



Where: Palazzo Verdi and the Madden Museum of Art

6363 S. Fiddlers Green Cir.

Greenwood Village, Co 80111



Honorary Chair: Jack and Adrienne Fitzgibbons

Gala Chairs: Mr. and Mrs. John Madden, Walter and Christie Isenberg
2009 Leadership Honorees: Sage Hospitality/Walter and Christie Isenberg, Dr., Noel and Tammy Cunningham/Strings, Kevin and Mary McNicholas/McNicholas Family,

HDSA Person of the Year: Carissa Krivanek



Please call 303-837-9937 for more information.

For detailed sponsorship levels please click here

Registered users can request event reminders.




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CONNECTICUT
Thursday, September 24, 2009
Tim Teufel Golf Outing






For more information please contact:
Chenell Tannure 212-242-1968, Ext 221 or ctannure@hdsa.org



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Sunday, September 13, 2009
Team Hope Walk- CT Chapter
Lighthouse Park
WHERE:East Haven, CT
For more information please contact:
Curehd2006@aol.com



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DELAWARE
Sunday, September 20, 2009
Home Run for a Cure- Delaware Chapter


Registered users can request event reminders.




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Sunday, September 27, 2009
Team Hope Walk- Delaware
Team Hope Walk

Wilmington, DE

September 27, 2009

For more information please contact:

Greg Wiley

1-877-925-5443 ext. 16

wiley4hd@gmail.com



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FLORIDA
Saturday, September 19, 2009
Team Hope Walk- Jacksonville, FL
Ed Austin Regional Park

The Police Athletic League of Jacksonville

Registration: 8AM

Walk: 9AM

Contact:

Tina Hellum

tinahellum@comcast.net

904-629-4448



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IOWA
Saturday, September 12, 2009
Team Hope Walk - Iowa Chapter
Team Hope Walk

Des Moines, IA

Gray's Lake

To register please go to

www.firstgiving.com/hdsateamhope



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MAINE
Saturday, September 26, 2009
Team Hope Walk- Maine Affiliate
Preble Stree & Back Cove
Maine Walk

Baxter Blvd. (Back Cove)

Preble St.

(across from Hannaford’s)

Portland, ME

Maine Walk Begins at Noon

Registration 11:00 AM



Please go to our website at www.hdsa-ne.org

for directions to our walk sites and additional information as it becomes available.



2009 Individual & Team Prize



For every $1,000.00 an individual or team raises

Receive five (5) tickets to our

New England Team Hope Walk Party.



The party will be held at the home of the Worcester Shark’s Ice Hockey Team located in Worcester, MA.



Guests will have the opportunity to join other walkers in a fun setting, enjoying music and food and if you are a hockey fan VIP seating for the game.

WHERE:Portland Maine
For more information please contact:
The New England Region



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MASSACHUSETTS
Saturday, September 19, 2009
Team Hope Walk - Boston

3rd Annual HDSA Boston Walk-A-Thon

DCR's Artesani Park

Near Harvard Stadium Charles River



Please go to our website at www.hdsa-ne.org

for directions to our walk sites and additional information as it becomes available.



2009 Individual & Team Prize



For every $1,000.00 an individual or team raises

Receive five (5) tickets to our

New England Team Hope Walk Party.



The party will be held at the home of the Worcester Shark’s Ice Hockey Team located in Worcester, MA.



Guests will have the opportunity to join other walkers in a fun setting, enjoying music and food and if you are a hockey fan VIP seating for the game.





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Saturday, September 19, 2009
Kevin Ganley Walk- MA Chapter
Heritage State Park
12th Annual Kevin Ganley Walk

Sampus Pavilion

Route 113 (The Boulevard)

Lowell, Massachusetts




Please go to our website at www.hdsa-ne.org

for directions to our walk sites and additional information as it becomes available.


Registration at 9AM

Walk at 10AM




2009 Individual & Team Prize



For every $1,000.00 an individual or team raises

Receive five (5) tickets to our

New England Team Hope Walk Party.



The party will be held at the home of the Worcester Shark’s Ice Hockey Team located in Worcester, MA.



Guests will have the opportunity to join other walkers in a fun setting, enjoying music and food and if you are a hockey fan VIP seating for the game.





WHERE:Lowell, MA
For more information please contact:
The New England Region



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Saturday, September 19, 2009
Team Hope Walk- Cape Cod
1st HDSA Cape Cod Walk

Sandwich Recreational Area

South Service Road

Registration 9am

Walk 10 am





Please go to our website at www.hdsa-ne.org

for directions to our walk sites and additional information as it becomes available.



2009 Individual & Team Prize



For every $1,000.00 an individual or team raises

Receive five (5) tickets to our

New England Team Hope Walk Party.



The party will be held at the home of the Worcester Shark’s Ice Hockey Team located in Worcester, MA.



Guests will have the opportunity to join other walkers in a fun setting, enjoying music and food and if you are a hockey fan VIP seating for the game.







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MICHIGAN
Sunday, September 20, 2009
Team Hope Walk- Michigan Chapter
Center Line Memorial Park
WHERE:25355 Lawrence Center Line, MI 48015
For more information please contact:
Krissi Putansu 586-822-1730



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MINNESOTA
Saturday, September 12, 2009
Team Hope Walk- MN Chapter
Saturday, Sept. 12

Hidden Falls Park, St. Paul, MN

8:30 am registration

9:30 am walk start

$15 before Sept. 8

$20 day of race

Registration: www.firstgiving.com/hdsa-mn



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NEW HAMPSHIRE
Saturday, September 12, 2009
Team Hope Walk- New Hampshire
2nd Annual Seacoast Walk

University of New Hampshire
Student Recreation Center
(Next to Whittemore Center)


Registration: 9AM
Walk: 10AM



Please go to our website at www.hdsa-ne.org

for directions to our walk sites and additional information as it becomes available.



2009 Individual & Team Prize



For every $1,000.00 an individual or team raises

Receive five (5) tickets to our

New England Team Hope Walk Party.



The party will be held at the home of the Worcester Shark’s Ice Hockey Team located in Worcester, MA.



Guests will have the opportunity to join other walkers in a fun setting, enjoying music and food and if you are a hockey fan VIP seating for the game.








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NEW YORK
Saturday, September 26, 2009
Team Hope Walk- Upstate New York




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Sunday, September 13, 2009
Team Hope Walk- Long Island
Team Hope Walk

NY Metro-LI

September 13, 2009

To register please go to

www.firstgiving.com/hdsateamhope

For more information please contact:

Chenell Tannure

212-242-1968, ext. 221

ctannure@hdsa.org



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Saturday, September 12, 2009
Team Hope Walk- New York City



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NORTH DAKOTA
Saturday, September 12, 2009
Team Hope Walk - Northern Plains Affiliate
Team Hope Walk

September 12, 2009
Lincoln Park Dr.

Grand Forks, ND



For more information please contact: Char Brekken at char.brekken@co.polk.mn.us



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OHIO
Saturday, September 05, 2009
Fore a Cure - Golf Outing
HDSA Northeast Ohio Chapter
Fore A Cure - Golf Outing


Hickory Nut Golf Course

23601 Royalton Road (Route 82)

Columbia Station, OH



Shotgun Start at 2:00 PM

Golf, Auction, Raffle and Steak Fry.

$75 per golfer

$280 per foursome


For more information contact Barbara Kaiser at 330-998-6600 or bkaiser@hdsa.org





Registered users can request event reminders.




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Saturday, September 19, 2009
Team Hope Walk- Ohio Valley Chapter
Ohio Valley Chapter

Contact: Tina Sunderhaus

Phone: 513-678-7693

Email: tsunderhaus4hd@gmail.com

Saturday, September 19

Joyce Park

Hamilton, OH

Registration: 9am

Walk:10am



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Saturday, September 12, 2009
Team Hope Walk- Cleveland, OH
Team Hope Walk

Cleveland, OH

September12, 2009

Wendy Park on Whiskey Island

2800 Whiskey Island

Cleveland, OH 44102



For more information please contact:

Rocky Kitzmiller

808-783-2874

rkitzmiller@hotmail.com



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PENNSYLVANIA
Monday, September 21, 2009
Madden Family GOlf Outing- Delaware Valley Chapter
For more information please visit: www.hdsadv.org





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Tuesday, September 08, 2009
John B. Cancelmo Memorial Golf Outing- Delaware Valley Chapter
FOr more information please visit: www.hdsadv.org





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Sunday, September 13, 2009
Team Hope Walk- Philadelphia
Team Hope Walk

Philadelphia, PA

September 13, 2009

To register please go to

www.firstgiving.com/hdsateamhope

For more information please contact:

Greg Wiley

1-877-925-5443 ext. 16

wiley4hd@gmail.com



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TENNESSEE
Sunday, September 13, 2009
Team Hope Walk- Knoxville, TN
Team Hope Walk

Knoxville, TN

September 13, 2009

For more information please contact:

Janice Watsky

866-712-0523

jwatsky@hdsa.org



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Friday, September 25, 2009
Trey Gray Tee Off for a Cure


Registered users can request event reminders.




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TEXAS
Saturday, September 12, 2009
Team Hope Walk- San Antonio
Team Hope Walk

San Antonio, TX

September 12, 2009

For more information please contact:

Janice Watsky

866-712-0523

jwatsky@hdsa.org



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Saturday, September 12, 2009
Team Hope Walk- Dallas
River Legacy Park- Elm Grove Pavillion

701 NW Green Oaks Blvd.

Arlington, TX



to register please go to: www.firstgiving.com/hdsateamhope

For more information please contact:Cindy Colangelo at clcconsulting1@verizon.net





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WISCONSIN
Sunday, September 27, 2009
Team Hope Walk- Fox Valley, WI
Team Hope Walk

Fox Valley Area, WI

September 27, 2009

Registration 8:30AM

Walk 10:00AM

Riverside Park

Riverside Park Pavillion

500 E. Wisconsin Avenue

Neenah, WI

For more information please contact:

Karla King

kking4hd@gmail.com






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Friday, September 11, 2009
"Casino Royale" Celebration of Hope- Wisconsin Chapter
Casino Royale” Hope Celebration

Friday, September 11th, 2009

Milwaukee Hilton City Center
509 W. Wisconsin Ave.
Milwaukee, WI 53203




Schedule of Events:

•Registration Begins 5:00 pm
•Cocktails and Silent Auction Begin, 5:00 pm
•Emily Whelan Performs, 5:30 to 7:15 pm
•Dinner and Honoree Presentation, 7:15 pm
•Silent Auction Closes and winners are announced, 7:15 pm
•Casino and Raffle Opens, 8:30 pm
•Diamonds and Martinis Performs in Casino and Dancing Begins, 8:30 pm
•Casino and Raffle Closes, 10:45 pm
•Raffle Winners Announced, 11:00 pm
•Event Commencement, 11:00 pm


Tickets



Individual Ticket -- $75

Ticket includes: dinner, casino gaming with “funny money”, auction entrance and live music entertainment



Table -- $750

Ticket includes: dinner, casino gaming with “funny money”, auction entrance, jazz music entertainment and signage



Registered users can request event reminders.




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Saturday, September 26, 2009
Team Hope Walk- Madison Wisconsin
Team Hope Walk

Madison, Wisconsin

September 26, 2009

Registration 8:30AM

Walk 10AM

8:30AM

Elver Park Shelter

Elver Park

1250McKenna Blvd.

Madison, WI 53719

To register online please go to:

www.firstgiving.com/hdsateamhope



For more information please contact:

Karla King

kking4hd@gmail.com

608-235-8660

Melissa Worthington

920-428-1074

mworthington@hdsa.org

Popcorn, Cereal Pack Antioxidant Punch

Popcorn, Cereal Pack Antioxidant Punch

http://www.webmd.com/diet/news/20090818/popcorn-cereal-pack-antioxidant-punch?ecd=wnl_day_082209

Mediterranean Diet Plus Exercise Cuts Alzheimer's Risk

Mediterranean Diet Plus Exercise Cuts Alzheimer's Risk

http://www.webmd.com/alzheimers/news/20090811/mediterranean-diet-plus-exercise-cuts-alzheimers-risk?ecd=wnl_hbn_082409

Might have a Bladder Infection

I have not had any problem , since I was put on that Catheter. They found 450mls stuck, in my bladder. It took ten minuets to pour. I hope I never have to be on it again. It was so pain full. I have seen head Nurse's give them to Patients. It looked so pain full. I thought, I wished I never had to go on it. At least I had Trevor and a good Nurse doing it. I was diagnosed with Bladder Retention. It has been forever since I had a bladder infection. We are going to the Hospital and to see what it is. I am voiding every ten min and in constant pain. I have been feeling like this for 3 days. If you have this, you drink tons of Cranberry juice.We still have Cranberry tea. Eat tons of yogurt. This is the real HD. We have to learn how to handle it when it gets hard. This is what challenges us. It all makes us stronger. We can fight HD. We can do scary things to help ourselves. Take the fear away. We have to fight HD, even if it is scary. Never give up. Don't give up, just because it is too hard. Fight for your right to live. You can feel better, when you let go of that fear. Don't even think of giving to HD. My mind got the Catheter, less scary. It is how we perceive things, that makes us scared. So did my Trevor. A good Nurse, won't make you feel a thing.

More Updates

I updated my HD information page.

We would like to let you know about an exciting upcoming event being held for the Huntington Society of Canada!

We would like to let you know about an exciting upcoming event being held for the Huntington Society of Canada!

Endless Boundaries Tattoo shop

(http://www.endlessboundaries.ca/)

is generously hosting this all day fun-filled event on

Saturday, August 22nd, 2009 at Casey’s Park in Embro

(333585 Plank Line, Salford, ON N0J 1W0).


Close to London, Woodstock, and Stratford, the day promises a lot of fun. There will be two tattoo stations set up, at which all of the Tattoo Artists are generously donating their time. Don’t feel like getting permanently altered? Enjoy the THREE LIVE BANDS, PIG ROAST BBQ, BIKE RUN (a 4 hour motorcycle ride for whoever wants to ride), and GREAT PRIZES!

The all day event begins at 12 noon, and will run all night! Want to stay the night? CAMPING IS FREE OF CHARGE!

Admission is $20, and once again, all proceeds go to the Huntington Society of Canada, helping families across Canada, while assisting in the search for a CURE.

Fun Weekiend/ Testing/ Meds

I have been feeling stable today. Not many mood swings, or depression. The pill has been making alot of difference in the past two days. I have been on Wellbruiton, since I was 19. If you get HD, when you get tested, they pop you on a anti-depression drug, right away. I took my results good. I gave comfort to my family. Asked about cures. I accepted it. They still put me on them right away. I had my Mom in a dream tell me I had it. That we would get cured right away. This weekend I get to go baby sit two cute kids, of one of my friends. They are precious. We went rafting with them and their parents, two weeks ago. This Sunday we are going again. Take our dogs. They are best doggie friends. Enjoy the rays with me. Enjoy life with me. Make life worth living. We are the ones that do that. We deserve to be treated, like everyone else. Feel like everyone else. We are not a disease. We are not HD. We are people. Everyone here knows I have HD. Get it right in the open. Let people in. Don't shut out life. Let life come. It is your right to have fun.

Canada to US: The Truth About Our Healthcare!

Canada to US: The Truth About Our Healthcare!

The Canadian health care system isn't perfect, but Canadians would never trade it for the one in the US.

Yet conservative politicians and greedy insurance companies are pushing lies about Canada's national system to scare the American public off national health care - risking Obama's whole movement for change and threatening his majority in Congress.

Sign the petition below and tell friends - huge numbers will cause a stir in US media and affect the debate, and Avaaz will deliver our message to wavering US Senators this month before they cast their vote in Congress.

To the US Congress and the American people,

We urge you to ignore the myths about health systems in our country and others that are being pushed by US healthcare companies. Our national system of public healthcare works very well and enjoys extremely high levels of public support. We wish you a healthy and honest debate about healthcare in the US.

http://www.avaaz.org/en/reform_health_care/?cl=298314886&v=3811

Be Happy

I started my extra wellbrutin today. I think it will work. I have been more moody instead of angry. I always have hope they will work. My meds always do. Today I was depressed. I have been depressed alot, and anxious. It has been going on for three weeks now. I know my meds will help me, get up again. The fight to be happy. It is always worth it. Don't give in. Don't let HD own you. Your life is yours. Fight for it back. HD will not take our souls. It will not take mine. Fight for a smile. Fight for a laugh. We have to fight for everything that comes natural, to other people. It makes us stronger than them. We can take on anything. We can take on HD.

Healthy

I have been healthy the past 2 days. Only the pain in my legs. Last night I was up all night in, pain and tossing and turning. There is noting we can do but fight. HD wants to tear us down. Bring us lower, every time. It wants to control and scare us. We have so much to fight. We fight every second, for our lives. We fight for every smile. We fight for every glimmer of hope. We have that inner strenght. It can shield us. It can protect us. We can fight for hope. Every glimmer is worth it. Every smile is worth it too. Fight with me. Fight for your life back.

FDA Issues Final Rules to Help Patients Gain Access to Investigational Drugs

FDA Issues Final Rules to Help Patients Gain Access to Investigational Drugs

The U.S. Food and Drug Administration published two rules today that seek to clarify the methods available to seriously ill patients interested in gaining access to investigational drugs and biologics when they are not eligible to participate in a clinical trial and don’t have other satisfactory treatment options.

To support the effort to help these patients, the agency also is launching a new Web site where patients and their health care professionals can learn about options for investigational drugs. In general, these options include being treated with a drug that has been approved by FDA, being given an investigational drug as part of a clinical trial, or obtaining access to an investigational drug outside of a clinical trial.

The new rule, “Expanded Access to Investigational Drugs for Treatment Use,” makes investigational drugs more widely available to patients by clarifying procedures and standards. The other rule, “Charging for Investigational Drugs Under an Investigational New Drug Application,” clarifies the specific circumstances and the types of costs for which a manufacturer can charge patients for an investigational drug when used as part of a clinical trial or when used outside the scope of a clinical trial.

“With these initiatives, patients will have the information they need to help them decide whether to seek investigational products,” said Margaret A. Hamburg, M.D., Commissioner of Food and Drugs. “For patients seeking expanded access to investigational drugs and biologics, the new rules make the process easier to understand.”

Clinical trials are studies of drugs and biologics that are still in development and have not yet been approved by the FDA. Many patients enroll in clinical trials to gain access to investigational therapies and contribute to finding out how well an investigational therapy works, and how safe it is for patients. Obtaining a drug or biologic under an expanded access program may be an option for some patients who are not able to enroll in clinical trials.

The FDA has allowed expanded access to experimental drugs and biologics since the 1970s. That access has allowed tens of thousands of patients with HIV/AIDS, cancer, and other conditions to receive promising therapies when no approved alternative is available.

“The final rules balance access to promising new therapies against the need to protect patient safety and seek to ensure that expanded access does not discourage participation in clinical trials or otherwise interfere with the drug development process,” said Janet Woodcock, M.D., director of the FDA’s Center for Drug Evaluation and Research. “Clinical trials are the most important part of the drug development process in determining whether new drugs are safe and effective, and how to best use them.”
Additional Information

Web site that explains the options for investigational drugs

Final Rules for Expanded Access to Investigational Drugs for Treatment Use and Charging for Investigational Drugs

The FDA grants Dimebon orphan drug status

COUNTDOWN FOR THE CURE- This is great. We have our second treatment.

The FDA grants Dimebon orphan drug status
Pfizer Inc. and Medivation Inc. have announced that the Food and Drug Administration (FDA) has granted Dimebon orphan drug status as a potential treatment for Huntington's Disease. The Orphan Drug Act, which was passed in 1983, provides financial and other incentives to pharmaceutical companies to develop treatments for diseases which affect less than 200,000 people per year.
The goal is to make drug development for orphan diseases more attractive than the smaller market would suggest. Patent protection is extended to seven years if the drug is approved, tax incentives are provided to conduct clinical trials, research grants may be available and the FDA's application user fee is waived. In addition, and there is a recognition that Phase III trials will involve smaller numbers of participants than for more common diseases.

A Phase III trial of the investigational drug dimebon (latrepirdine)* has been initiated for patients with Huntington disease. The international safety and efficacy trial, known as HORIZON, is designed to evaluate the potential benefits of dimebon on cognition (thinking and memory) in patients with Huntington disease.

"Based on the promising results of our Phase II trial of dimebon in Huntington disease, we are pleased to advance dimebon into late-stage clinical development," said Lynn Seely, M.D., chief medical officer for Medivation. "Huntington disease is a fatal genetic disease for which no medications are currently approved by the FDA to treat the cognitive impairment associated with the condition."

*Latrepirdine is the proposed generic (nonproprietary) name for dimebon.

Design of the HORIZON Study

The double-blind, placebo-controlled Phase 3 trial will enroll approximately 350 patients with Huntington disease at approximately 50 sites in North America, Europe and Australia. Patients will be randomized to receive either dimebon (latrepirdine) 20 mg three times daily or placebo for six months.

The primary endpoints of the trial are the Mini Mental State Examination (MMSE), which measures cognition, and the Clinician's Interview-Based Impression of Change, plus caregiver input (CIBIC-plus), which measures global function. The trial will include only patients who have cognitive impairment, as subjectively assessed by an investigator and objectively by MMSE score.

Secondary endpoints include the Neuropsychiatric Inventory (NPI), which measures behavior; the Alzheimer's Disease Cooperative Study - Activities of Daily Living (ADCS-ADL), which measures self-care and daily function; and the Unified Huntington Disease Rating Scale (UHDRS'99) Total Motor Score, which measures motor impairment; and safety.

The trial is being conducted in collaboration with the Huntington Study Group (HSG) and the European Huntington's Disease Network (EHDN). The HSG is a non-profit group of experienced clinical trial investigators from medical centers in the United States and abroad dedicated to clinical research of Huntington disease. The EHDN is a non-profit network of professionals providing an infrastructure for large scale Huntington disease clinical trials throughout Europe.

For more information about the HORIZON study, please visit http://www.horizontrial.com/ or call 800-487-7671. A list of participating sites can be found here: Horizon sites. It will be updated regularly as more sites are up and running.

About Dimebon

Dimebon (latrepirdine) is an investigational drug in Phase 3 development for the treatment of Alzheimer's disease (AD) and Huntington disease (HD). In preclinical studies, dimebon has been shown to protect brain cells from damage and enhance brain cell survival, potentially by stabilizing and improving mitochondrial function. The dimebon mechanism is distinct from currently available AD and HD medications.

About the Pfizer/Medivation Dimebon Collaboration

Medivation and Pfizer have a global collaboration to develop and commercialize dimebon for the treatment of Alzheimer's disease and Huntington disease. Under the terms of the agreement, the companies are working in partnership to seek FDA approval for dimebon and bring it to market in the United States. In addition, following FDA approval, Medivation will co-promote dimebon to specialty physicians in the U.S. Pfizer has responsibility for development, regulatory and commercialization outside of the U.S.

World Congress on Huntington's Disease 2009

Sep 12 2009
Vancouver, Canada will be the host city for the 2009 World Congress on Huntington’s disease. The scientific program will feature presentations on recent advances in genetics and the disease mechanisms of HD, recent approaches to developing experimental treatments, and the latest findings from clinical trials.
The 2009 Congress will also include presentations by caregivers and international HD organizations, with sessions on social, historical and ethical perspectives of HD.
For more information on the Congress please click here

Completed Studies

1
Completed
A Study of the Novel Drug Dimebon in Patients With Huntington's Disease
Condition:
Huntington's Disease
Interventions:
Other: Placebo; Drug: Dimebon
2
Completed
Safety Study of the Novel Drug Dimebon to Treat Patients With Huntington's Disease
Condition:
Huntington's Disease
Intervention:
Drug: Dimebon
3
Completed
Individuals' Patterns of Disclosure About Huntington's Disease (HD) and the Association With Adaptation to HD
Conditions:
Huntington's Disease; Disclosure
Intervention:
4
Completed
Safety and Tolerability Study of Phenylbutyrate in Huntington's Disease (PHEND-HD)
Condition:
Huntington's Disease
Intervention:
Drug: sodium phenylbutyrate

My Amazing Lucky/ Trevor's Brithday

I got my antidepressant upped. I was on the dose for 6 years, it needed to get more potent. In two weeks, we will have a review. Lucky, is the prefect dog. He is amazing. He is lucky to get a Mom that is here everyday. I have so much fun with him. Whenever, I drop my meds, he gets them for me. He always finds them. He never eats them. he knows, somehow that they are important for Mommy. The first time I was amazed. Me and my Nurse were looking, Lucky pointed it out to us. I have no idea how he knows, but he knows. I would be screwed without my meds. Trevor's Mom surprised Trevor and came down, for his Birthday. He turned 37. I call him my old man. We went for a Picnic and a hike this Sunday. Live your life outside. Enjoy. Don't hide inside. Come out with me and play outside. "Don't use HD as an excuse", as my Dad told me.

Hope

They upped my wellbruitin today. In two weeks we will see if they work.There is one word, we should never let go. That is hope. Say this word again and again. Do not lose sight of it. Don't ever leave with out. Keep you hold on hope. We need it to survive. We ca't live without it. We can't do anything without it. We just can't give up our hopes and dreams. Dream of the future with no HD. Dream of cures. They will come true. Every dream will c0me reality.

Made New Poem

It is called time. Hope you enjoy it.

Illinois Chapter of HDSA is having a retreat weekend

By the way, don't forget that the Illinois Chapter of HDSA is having a retreat weekend at Oregon, Illinois, and Lake LaDonna. Three days of fun in the sun including a sand bottom lake to swim in as well as your usual summer games....the cost is $30 and covers all your food and camping activities.

For more information, go to

http://www.hdsa-il.org/id40.html

If you're in the greater Chicagoland area, come join us! (Wisconsin/Illinois /Indiana is considered the greater Chicagoland area)

Trevor's Birthday

I get my meds upped tomorrow. I can't wait. I am struggling. They have not been upped in along time. I just want to feel better. Today is Trevor's Birthday. He turned 37. We had dinner with his Mom and Dad. I was too sick to volunteer at the Gleaner's today. My flu is over. It was the first flu I had a year. Boccie is over. The next Special Olympics are bowling and Rhythmic Gymnastics. They start in September. I can't wait. They are my favourites. Never give up the struggle for happiness. It is worth it. It is always worth it.

Trio starts East Coast bike trek for HD, "Slowing the Way" today!

Any one living along the biker's route along the East Coast [Georgia, the Carolina's, Virginia, Maryland & NJ-NY] might want to look at their tour schedule [below] and see if they'll be going through your town. Maybe you can go out to cheer them on!

Trio starts East Coast bike trek Wednesdayhttp://www.northwes%20tgeorgia.%20com/local/%20local_story_%20223185131.%20html

Dalton massage therapist is one of three bicyclists attempting to pedal 1,300 miles along the Eastern Seaboard - starting Wednesday - to raise funds to fight Huntington's Disease. Kathleen Vlodek, a masseuse who works out of The Good Earth health food store in Bry-Man's Plaza, her husband Bryan Hensley, and their friend, Hector Victoria, started pedaling at 7 a.m. Wednesday from Fountain of Youth Park in St. Augustine, Fla., on their "Slowing the Way" fundraiser. Their destination is Central Park in New York City in 30 days.Victoria, 37, whose father died from the disease, was diagnosed with Huntington's earlier this year. His dad took up riding a bicycle before he became confined to a nursing home, so it was Victoria's idea for the fundraiser. "He said, 'Hey, let's take a bike ride for adventure' to us one day, and that's how it started," said Vlodek, 36. "We had a special bike made for Hector that has 24 gears. It's the same frame we bought from a friend who rode a bike across the country for (a) leukemia (fundraiser) ."Along the way they'll hug the coastline of the Atlantic Ocean, taking ferries from one barrier island to another. The small contingent will spend the night in hotels procured by the Huntington's Disease Society of America or stay in the homes of those whose family members have been affected by the disease.Thus far they've raised slightly more than $4,000, but their goal is at least $20,000. That means they'll be peddling their message along the way. They will do that by trying to get their trip publicized in local newspapers and visiting bike shops to dispense pledge cards they've created.

According to the Huntington's Disease Society of America Web site (www.hdsa.org) , it is "a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care."Victoria has only been riding a stationary bike inside for six months, but thinks he's ready for the ride - even though the temperature in St. Augustine Tuesday afternoon was 100 degrees. "I don't think it (the ride) will have an effect on me yet," the Philadelphia, Pa., resident said. "It will still be a couple more years before I'm affected by Huntington's. "But Hensley, 32, said they're not taking any chances. "We'll be keeping an eye on Hector and on each other," he said. "And of course, we'll be drinking lots of water, taking vitamins and making lots of stops. You also have to eat way more often than you think you would need to."They hope to cover 40 to 45 miles a day, with their longest day topping off at 65 miles. "I believe they'll be able to do it," said Cassie Pewitt, a massage therapist at The Good Earth.

"They're supposed to be calling me throughout the trip and I'll be posting their blogs on MySpace."Vlodek said there may also be clips placed on YouTube.

Two Web sites are devoted to tracking the trek - www.firstgiving. com/slowingthewa y and www.myspace. com/slowingtheway

We will send out daily updates, videos, as we head north slowing the way.

TRIP Route & Mileage [from the MySpace link]Arrive in

St. Augustine, FL on Tues,

August 11thWeds,

August 12th Fountain of Youth Park to St. Amelia Island,

FL 56.5 milesThurs,

August 13th Amelia Island,

FL to Brunswick,

GA 56 miles Fri,

August 14th Brunswick,

GA to Richmond Hill,

FA 62.3 miles Sat,

August 15th Richmond Hill,

GA to Savannah,

GA 25 milesSun,

August 16th Savannah,

GA to Beaufort,

SC 43.1 milesMon,

August 17th Beaufort,

SC to Charleston,

SC 69 milesTues,

August 18th Day OffWeds,

August 19th Charleston,

SC to Georgetown,

SC 59 milesThurs,

August 20th Georgetown,

SC to Myrtle Beach,

SC 36 miles Fri,

August 21st Myrtle Beach,

SC to Shallotte,

NC 38 milesSat,

August 22nd Shallotte,

NC to Carolina Beach,

NC 40 milesSun,

August 23rd Carolina Beach,

NC to North Topsail Beach,

NC 50 miles Mon,

August 24th North Topsail Beach,

NC to Atlantic Beach,

NC 66 miles Tues,

August 25th Atlantic Beach,

NC to Ocracoke,

NC 64.3 miles Weds,

August 26th Ocracoke,

NC to Rodanthe,

NC 54 milesThurs,

August 27th Rodanthe,

NC to Kitty Hawk,

NC 40 miles Fri,

August 28th Kitty Hawk,

NC to Coinjock,

NC 35 miles Sat,

August 29th Coinjock,

NC to Virginia Beach,

VA 50 miles Sun,

August 30th Day Of

fMon, August 31st Virginia Beach,

VA to Cape Charles,

VA 44 milesTues,

Sept. 1st Cape Charles,

VA to Pocomoke City,

MD 66 milesWeds,

Sept. 2nd Pocomoke City,

MD to Ocean City,

MD 44 milesThurs,

Sept. 3rd Ocean City,

MD to Wildwood Gables, NJ 53 miles

Fri, Sept. 4th Wildwood Gables,

NJ to Atlantic City,

39 miles Sat, Sept. 5th Atlantic City,

NJ to Tom Rivers,

NJ 54 milesSun,

Sept. 6th Tom Rivers,

NJ to Atlantic

Highlands,

NJ 50 miles Mon

, Sept. 7th Day OffTues,

Sept. 8th Atlantic Highlands,

NJ to Central Park, NY

The Huntington's Disease Society of America takes you:In The Huddle...

Breaking News!

Just added to the program:ESPN's NFL Announce Team of Mike Tirico, Ron Jaworski,Jon Gruden, Michele Tafoya and Suzy Kolber.

The Huntington's Disease Society of America takes you:In The Huddle...With Head Coach Norv Turner, Quarterback Philip Riversand Linebacker Shawne Merriman along withHonored Guest Don Coryell.
An inside look at what only the players and coaches know...

Saturday, October 17, 20096:00PM at The Manchester Grand Hyatt
The evening will feature scrumptious food and beveragesas well as the Gala's renowned silent and live auctions.

To purchase tickets go to our website by clicking here or on the players above.For questions, contact: Natalie Carpenter 619.225.2255 or click here.

Flu.

I have got the flu. I won't be blogging today.

Upset Tummy

have an upset tummy and a fever. I won't be blogging tonight.

Disturbed Calcium Signaling May Play A Critical Role In Brain Cell Degeneration

Disturbed Calcium Signaling May Play A Critical Role In Brain Cell Degeneration

University of Utah School of Medicine researchers and their colleagues at University of Texas (UT) Southwestern Medical Center have found strong evidence that abnormal calcium signaling in neurons may play an important role in the development of spinocerebellar ataxia type 2 (SCA2), a disorder causing progressive loss of coordination, speech difficulty, and abnormal eye movements. Their findings are published in the July 27, 2009 issue of Journal of Neuroscience.

http://www.medicalnewstoday.com/articles/158589.php

Quality Advocate

A Timely Debate
http://trusted.md/columns/quality_advocate

Fun Weekend

We went to see Aice in Raduim. We stayed for Sat night. We went to three beaches, until, we found one for dogs. There were 20 dogs there. Lucky loved it. Yesterday we went rafting, with two friends. I have never been rafting before. I had so much fun. We are going to get a raft ourselves. We just loved it so much. Little Lucky and his dog friends kept following each us on cliffs. He was not letting us go. My meds are getting to be reviewed. I feel un medicated. I feel like crazy everyday. I fell on some rocks too. scary. I have had bad chorea. Trouble eating. Trevor has to dress me at night, when I get into my PJ's. Everything has gotten worse and Trevor does not want to lose his best friend. I have pain in my legs, and need to kick. The key to survive is use your force. Grip you life. Don't let it rip. Maintain your life. Fight to be happy. Fight all the time. we fight a battle, everyday that only we know. Never give up your focus. Keep your eyes on the brilliant sunshine. Don't soak them in darkness. Never give up hope. Things will get better. They always will.

FREE HD Educational Event

For those of you living in Texas, this FREE HD Educational Event looks to be a good one, plus its an opportunity for people from Huntington's Disease families to meet other families from their state to make friends, establish a network of support, etc. This event is one week from tomorrow, so if you think you can make it RSVP to: 972-724-1367 or txhd.socialworker@verizon.net

HDSA Texas Affiliate Education EventLIVING WITH HD: A GUIDE FOR FAMILIES

Presented by Lundbeck Pharmaceuticals

Date: Saturday, August 15, 2009

Time: 10:00 am - 4:00 pm

Location: Baylor University Medical Center

Gaston Ave, Dallas, TX17

Roberts Davis Auditorium(FREE parking in the Baylor garage)

Cost: NO COST TO ATTEND

RSVP: 972-724-1367 or txhd.socialworker@verizon.net

Lunch is provided. - Please RSVP to help us plan for lunches and seating. GET ANSWERS TO SOME OF YOUR MOST DIFFICULT QUESTIONS! KEYNOTE ADDRESS - "Update on Huntington's Disease" - Dr. Madhavi Thomas, Medical Director for the Movement Disorders Clinic at Baylor Medical Center - Dr. Thomas has done a Fellowship in Movement Disorders at Baylor College of Medicine in Houston and a Fellowship in Experimental Therapeutics at the National Institutes of Health in Bethesda, MD INVITED GUEST SPEAKER - "Managing Difficult Behaviors" - Dr. Arik Johnson, a clinical psychologist and behavioral assessor at the HDSA Center of Excellence at UCLA. Dr. Johnson is involved in the PREDICT Study for HD. MORE GREAT TOPICS AND SPEAKERS! "How to Talk To Your Kids about HD" - Nina Ross, MSW-MPH, clinical social worker at the HDSA Center of Excellence in MN. "Avoiding Caregiver Burn-out and Guilt" - Pamela Brandon, director Aging and Disability Resources Center of Tarrant County All Sessions Will Include Time Allotted For Questions and Answers

CALL or EMAIL TO REGISTER TODAY!!

RSVP: 972-724-1367ortxhd.socialworker@verizon.net

HD China Walk

One of WEAREHD friends sent me this.

Im doing a China Trek in may 2010. I would be greatful of any fundraising idea's please.
If your able to sponsor me i will be very greatful for the support also. I have a widget on my profile on here.

. Thankyou Zena

http://www.wearehd.org/blondie1978

Adovacy For Us

Michelle Mullagan, my NDP party leader, a socialist party. She was in tears when she heard Trevor and I's story. She never forget it, or us. She called me today, she wants to read our story for her first house meeting. She wanting my premision. I gave the details of our story. We are touched that she remembered and wanted to help us. She wants to change disability laws here. She thinks it is a sexist law too. To have the Husband works. The wife sits at home. She thinks it should be easier to get disability. We got screwed put of our disability when Trevor got layed off. We had it for two months, they took it away. We had not money then. We just had my Dad. She will email and tell me the progress that she will make. We are so touched, that she wants to help us. Anyone fighting disability. Talk to you Representative of Parliament. It is working for us.

Wikipedia

Thanks to Dr. Finkbeiner's efforts, Huntington's Disease is now a "featured article" on Wikipedia!!! ! Let's show him our appreciation. ......... ask all of your family, friends and co-workers to visit the Wikipedia's link for Huntington's Disease..... ....those 'hits' on this page will demonstrate to Wikipedia that people around the globe are interested and want to be educated about Huntington's Disease!!!!


Subject: Dr. Steve Finkbeiner's pix of medium spiny neurons is on Wikipedia
Hello Friends:Here's the link to the Wikipedia site for Huntington's disease: http://en.wikipedia .org/wiki/ Huntington% 27s_disease.

When you go there, please see the colorful picture of the medium spiny neuron---this was taken by Dr. Steven Finkbeiner. If you click directly on the picture, you will be given more information.Here's a note from Steven Finkbeiner, MD, PhD, Gladstone Institute, SF, Director Taube-Koret Center for Huntington's Disease Research, San Francisco:

"I have been working with Lee Van-Jackson at Wikipedia on the entry for Huntington's disease, and it just got promoted to featured article. Less than 0.1% of articles in Wikipedia receive that distinction, which is given by their editors based on the quality and accuracy of the article. Since it is the first "hit" when you Google "Huntington' s disease", and Wikipedia gets 65 million visitors a month, I am hoping that the effort will help us in our goal to educate the public."

Fundraiser's

A note to you from Judy [written to members of the HDSA Northern Chapter]:
Researchers like Dr. Finkbeiner are making a difference in HD research. Someday a treatment or cure will be found, but we all want that day to come sooner. Research dollars are needed to make that happen.

You will be receiving a research appeal letter from me in the next day or so. Please be generous. HDSA is funding two HD researchers in Northern California, one at the Gladstone Institute in SF and one at Stanford. Your help is needed now more than ever before. If HD families don't give, who will?"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has."

Margaret Mead

My best, Judy Roberson

President, HDSA Northern California Chapter

TJRobclan@aol. com
www.hdsanortherncal ifornia.org/

Pain Full Legs/ More Holidays.

Last night I had painfull legs. I was kicking and tossing and turning. It is so painfull. I was up all night like that. I also was having hallinctions. I saw flashing lights. I fell today, I almost hit my head on the door. I had a hard time getting in the car. I been really tipping crazy all week. I had a hard HD day. We are going to Cranbrook to shop on Friday. I will not be blogging. I will be having fun. We are ging to hit Elizibeth Lake, it is in Cranbrook. We are going to Radium to see Alice. Next week we will be camping. Iwill be taking the next weekend too. Don,t let HD take you. Fight with me. We have the strength, together. We can fight whatever is put in front of us. HD shoud not have a hold on me. Trevor worrries more then I do. If someone worries, it means they care. People know us. They love us. They know we are not HD. We are people. We are not HD. Never forget that. You don't need to deny HD. Let it in the door. If you let it in, you can get over the pain. Join us.

More Updates

I updated My HD Info.

Boccie

Today Trevor and I played Special O Bocchie. It was a practice game. We had 6 people on holidays. It takes 8 to play. Trevor played to make up. We had three volunteer's playing with us. Trevor was awesome ! We got kicked! Lucky is such a good boy. He is the perfect doggie. every time I drop my meds, he gets them back. He found them and pointed them to me and my Nurse's. One night I thought I lost them. He looked like crazy and could not find them. I am feeling better. I am feeling balanced again, without having to up my meds. Try to stay above the line. Try to stay above HD. Let it lay down below. Kick it down. Fight it. Fight it away. Never let HD get into your life. Do It let it take your life over.

HDA fundraising: London Marathon

HDA fundraising: London Marathon

2010 Virgin London Marathon

If you are interested in running the 2010 Virgin London Marathon to support the HDA, the application process is now open until October 2009. For an application form, please contact Head Office on 0151 298 3298 or email info@hda.org.uk.

2009 Flora London Marathon
June 2009

Sunday 26th April 2009 saw the world famous Flora London Marathon. Ruth Sands, Sue Hill and Sue Young, all Regional Care Advisers from the HDA set up our banners and balloons at Stand H in Horseguards Parade, in preparation to greet our Marathon runners.
This year we had 4 Gold Bond winners; Matthew Ellison, Clifford Bowers, Damien Fortune and Andrew Vincent. Each runner has raised way in excess of the minimum £1000 each, plus at least 7 additional runners managed to secure their own places in the Flora London Marathon Ballot to support the HDA, including:

Shane Dempsey
Simon Mapes
Ed Connors
Michelle Summers
Gair Matthews
Julie Johnstone
Mike Lord
Our Gold Bond Runners achieved the following times:
Runner
Time
Position
Matthew Ellison
4 hours 38 minutes
15493rd
Clifford Bowers
5 hours 6 minutes
19647th
Damien Fortune
4 hours 12 minutes
10809th
Andrew Vincent
3 hours 50 minutes
6545th

We are sincerely grateful to every one of our runners for the sheer hard work they put in, both in the lead up to and during the event, but also for their tremendous efforts to raise money to support our work. The HDA are very proud of you all, thank you!

Money is still coming in from this year's Flora London Marathon, but current indications show that donations will exceed £12,000. Thank you to all of our runners and their supporters for raising so much money to support our work.

As you can see from the photographs, spirits were running high at what proved to be another very physically demanding and emotional London Marathon. This was the final year that Flora officially sponsored the event. Next year Virgin is taking over the sponsorship.

Happy Victora Day

Got more US reps

Patty Hillman, 47, prays to cope with the looming possibility of serious illness. But she’s also taking action.

The Jeffersonton resident has a 50 percent chance of inheriting Huntington’s Disease from her father, and her 23-year-old son faces the same bleak possibility.

“It is always in the back of your mind,” said Hillman, a systems engineer, noting that most at-risk people struggle with the threat of HD. “For me, prayer lightens the load and I feel like I can set HD aside for a little bit and move on to whatever is in store for the day.”

HD is a progressive, degenerative, neurological ailment that causes physical and mental deterioration over a decade or more. Symptoms include involuntary movement, dementia, obsessive-compulsive behavior, depression, mood swings, inability to concentrate and immobility. If a person carries the mutated HD gene, most people start to display symptoms between the ages of 30 to 50, Hillman said.

There is no treatment, no cure, and it is terminal.

Hillman’s father, who lives in Florida, was diagnosed with Huntington’s six years ago at age 68. He has since lost most of his mobility and has difficulty with speech: “He knows what he wants to say, but the process of getting his mouth to form words is difficult,” Hillman said, adding that most of his symptoms have been physical.

Not so with her grandfather.

Her dad’s dad died at age 68 in 1959 after living the last years of his live in a state mental institution. There was never any talk of him growing up, Hillman said, and she didn’t learn the truth that he was committed for unknown reasons until much later.

“We did not know that HD was in our family until my dad was diagnosed and the mystery surrounding my grandfather was immediately solved,” she said. “A lot of people with HD were institutionalized with a diagnosis made in my grandfather’s generation. People were also dismissed as alcoholics because of the shuffling gait and slurred speech.”

According to Joseph LaMountain, who represents the Huntington’s Disease Society of America in Washington, D.C., about 30,000 people nationwide suffer with HD while another 250,000 are at risk of inheriting it.

Taking actionThough there is no cure, Hillman is doing what she can to make life easier for folks living with the illness. To that end, she recently visited with Republican Whip Eric Cantor, Culpeper’s congressman, on Capitol Hill to discuss House Resolution 678 — the Huntington’s Disease Parity Act of 2009.

Cantor is not a sponsor of the bill, but she and other HD advocates hope he can use his position to bring needed reform to Social Security regarding disability benefits.

HR 678, introduced this year by Calif. Reps. Bob Filner (D) and Brian Bilbray (R), would require the Social Security Administration to revise the medical criteria for evaluating disability in a person with HD.That criteria is so outdated, Hillman said, that it even calls HD by the wrong name.

“People with HD are having to apply for disability over and over and even hire lawyers to get their disability approved, simply because the criteria has not been updated to reflect current medical standards,” she said.

HR 678 would also waive the two-year waiting period for Medicare eligibility for people disabled by HD.

Medication exists to treat certain symptoms of the disease, but because of all the red tape and outdated information, some sufferers are forced to get paper divorces just so they can qualify for Medicaid, Stillman said.

HD advocate Dr. Tim O’Neill, who went to Capitol Hill with Hillman and her husband, Bryan, has a brother-in-law who faced such obstacles receiving disability benefits.

“Greg is 39. He has been unemployable for six or seven years,” O’Neill wrote in an e-mail to Hillman. “He has significant chorea as well as cognitive and psychological issues.”
The first time Greg applied for disability, he was denied. He has since been approved for the Social Security benefits, but it took a while. Greg’s father died of HD at age 62, the same age as when his Medicaid benefits finally kicked in.

“I believe (Greg’s mother) has acquired significant debt including a second mortgage on her home,” said Dr. O’Neill, mentioning the “crippling financial burden of HD.”

Stillman is working on getting the law changed so as to ease some of that burden.
During her recent 20-minute meeting with GOP Whip Cantor, she presented him with a petition signed by 300 people in support of enacting the new legislation. The congressman was open to doing to what he could, Stillman said.

“He mentioned something akin to the fact that there was no excuse for this continuing.”
Cantor spokesman Brad Dayspring said the congressman was “extremely sympathetic” to Hillman’s situation.

“He agrees that the SSA should probably reevaluate possibly outdated criteria,” Dayspring said.
Stillman has high hopes that something concrete will come out of the meeting.
“While updating the Social Security regulations will not help alleviate HD, it will help alleviate the emotional worry and financial concerns of being denied disability time after time,” she said.
Changing prioritiesLaMountain with the HDSA said it’s his job to make it a priority to enact the new legislation. Why the Social Security regulations have not been updated to reflect current medical knowledge on the disease is the $64,000 question, he said.

“Nobody disagrees that it needs to be changed, but it’s just not a high priority,” he said.
That’s where someone like Cantor, the No. 2 Republican in the U.S. House, can make a change, LaMountain explained, adding, “He is in a leadership position in Congress and he can do something about it.”

“The support he can give is behind the scenes,” LaMountain went on, saying Cantor could work to enact change to the Social Security regulations. “When a federal agency hears from someone in his position, they tend to pay attention.”

LaMountain, who suspects it will be a while before HR 678 is enacted, encouraged folks in Virginia’s Seventh District to contact Cantor’s office in support of bringing relief to HD patients.
In the meantime, Stillman will keep praying. She has strong family support and tries not to worry about the future.

“Bryan, my husband, has said that no matter what happens, he is not going anywhere,” Stillman said of her 26-year marriage. “But that is no guarantee. He told me one day, ‘It is what it is,’ and those five little words help me enormously."

Fun Anniversary

I had so much fun. We went to the beach a couple of times. Trevor got me to swim again. I floated off his back. I am too scared to swim. He holds me. It was so hot, we had to cool off. Half of Creston was at the lake. The cabin was beautiful. We loved it. We went on a hike that lead up to a lighthouse. You climb up a mountain. Then there is the lighthouse. You come up it. It has a fantastic view of the lake. We had so much fun. We took Lucky. He had a fun time. He was a happy boy. Tomorrow I have Special O Boccie. I hope it doe not thunderstorm. That has ruined post of our games this summer. It ruined 6 games. Keep active with me. Don't let HD tear you down. Fight it with exercise. I still do everything I used to when I first got diagnosed. Keep fit. Build brain cells with me. We need neurons. This is the only way to win the day to day battle. Get excited for exercise. Do something fun.

www.RuntoCureHD. com

For those in Texas or nearby states [and there are quite a few of you].....the below not only sounds like a really competitive event, but a fun one too! Details can be found here:

http://www.runtocurehd.com/
Run To Cure Huntington's Disease 5K

Set For Sugar Land's Oyster Creek

Parkhttp://www.fortbend now.com/2009/ 07/31/39291

July 31st, 2009 by Bob Dunn

Published in News

The 8th Annual Run to Cure Huntington's Disease, presented by HCSS and Team Hope Walk for HD, will take place Saturday, Oct. 10 at Sugar Land's Oyster Creek Park. The 5K run will start at 8:30 a.m., followed by a 5K walk-a-thon at 9 and a Kids K event at 9:30.

One of the Houston area's most competitive 5K runs, the Run to Cure HD will once again award the top male and female finishers of the race with a championship prize of an expense-paid trip for each winner to the Carlsbad Marathon in sunny San Diego in January, 2010. The race will be electronic-chip timed so all competitive runners will have the advantage of knowing their exact finishing time. Awards will also be presented to the top fundraising run and walk teams.

Serving as masters of ceremony for this year's event will be Sugar Land City Councilwoman Jacquie Chaumette and KPRC-TV Local 2 Sports Anchor Randy Mcllvoy. "The Run to CureHD is an event for both the avid competitive runner and walkers that are looking to support a good cause," said Andy Bergman, chairman of the RunToCureHD "We are striving for a cure for Huntington's disease, and support for this event will go a long way towards that achieving the goal."

When the running finishes, the party begins! Runners that have participated in previous years know that the HDSA Run to Cure HD features one of the best post race parties in America. With great food, cold drinks and the scenic beauty of Oyster Creek Park providing the venue, there is no place that you would rather be on Oct. 10!

Registration for both the competitive and non-competitive 5K is only $25, and the Kids K is only $20 with additional discounts for team registrations.

Registration is open at http://www.runtocurehd.com

and will be available on-site the morning of the race.

Dimebond Phase Three Study

This is it. Countdown for the cure is here. Soon we will be cured. This is a daily med you take a day. It has less side effects than the placebo. I recommend this study. This one is really good. This is our cure. The generations will stop. We won't have HD anymore. It would disappear. Join. Help us fight the cure. It is here.

Pfizer And Medivation Initiate Phase 3 Trial Of DimebonIn Patients With Huntington Disease

http://www.prdomain.com/companies/P/Pfizer/newsreleases/200973174877.htm

U.S. Orphan Drug Designation Granted for Dimebon for Treatment of HuntingtonDisease 30 Jul 2009 , New York, San Francisco : Pfizer Inc (NYSE: PFE) andMedivation, Inc. (NASDAQ: MDVN) today announced the initiation of a Phase 3trial of the investigational drug dimebon (latrepirdine)* in patients withHuntington disease.

The international safety and efficacy trial, known asHORIZON, is designed to evaluate the potential benefits of dimebon oncognition (thinking and memory) in patients with Huntington disease. Thecompanies also announced that the U.S. Food and Drug Administration (FDA)has granted orphan drug designation to dimebon for the treatment ofHuntington disease. "Based on the promising results of our Phase 2 trial of dimebon inHuntington disease, we are pleased to advance dimebon into late-stageclinical development," said Lynn Seely, M.D., chief medical officer forMedivation. "Huntington disease is a fatal genetic disease for which nomedications are currently approved by the FDA to treat the cognitiveimpairment associated with the condition."

Orphan status is granted by the FDA to promote the development of productsthat demonstrate promise for the treatment of rare diseases affecting fewerthan 200,000 Americans annually, such as Huntington disease, which affects30,000 individuals in the United States, with another 150,000 at risk.Orphan drug designation entitles Pfizer and Medivation to a seven-yearperiod of marketing exclusivity in the United States for dimebon if it isapproved by the FDA for the treatment of Huntington disease. It also enablesthe companies to apply for research funding, tax credits for certainresearch expenses, and a waiver from the FDA's application user fee.

*Latrepirdine is the proposed generic (nonproprietary) name for dimebon. Design of the HORIZON StudyThe double-blind, placebo-controlled Phase 3 trial will enroll approximately 350 patients with Huntington disease at approximately 50 sites in NorthAmerica, Europe and Australia. Patients will be randomized to receive eitherdimebon (latrepirdine) 20 mg three times daily or placebo for six months. The primary endpoints of the trial are the Mini Mental State Examination(MMSE), which measures cognition, and the Clinician's Interview-BasedImpression of Change, plus caregiver input (CIBIC-plus), which measuresglobal function. The trial will include only patients who have cognitiveimpairment, as subjectively assessed by an investigator and objectively byMMSE score. Secondary endpoints include the Neuropsychiatric Inventory (NPI), whichmeasures behavior; the Alzheimer's Disease Cooperative Study - Activities ofDaily Living (ADCS-ADL), which measures self-care and daily function; andthe Unified Huntington Disease Rating Scale (UHDRS'99) Total Motor Score,which measures motor impairment; and safety. The trial is being conducted in collaboration with the Huntington StudyGroup (HSG) and the European Huntington's Disease Network (EHDN). The HSG isa non-profit group of experienced clinical trial investigators from medicalcenters in the United States and abroad dedicated to clinical research ofHuntington disease. The EHDN is a non-profit network of professionals providing an infrastructure for large scale Huntington disease clinicaltrials throughout Europe. For more information about the HORIZON study, please

twww.horizontrial.com

or call 800-487-7671 or +49 731 5006 3103

.

Sent to me

This is great for everyone in the States. We are getting close.

Congressman Glenn Nye from Virginia said that he will support HR678. He attended a picnic that my mom's support group put together this past Saturday and gave her a definite yes to support the bill today :) It was really nice of Congressman Nye to take a couple hours out of his Saturday to attend the picnic. He got to meet several people at various stages of HD and their families. I'm so proud of my mom and everyone who goes out and gives all they have to get support for our cause!