Love Life

We took Art out for dinner. Now he is at CRIB. We have to pick him up tonight at 10:00pm. Tomorrow, we are going to have Terry and Art, over for a BBQ. It is horribly hot the past two days. Lucky gets heatstroke. I walk around with a doggie bottle of water, for him. Trevor made a obstacle course for me to learn how to drive. It is fun. Tee Ball is my favourite Special Olympic event. I love it. I can use my scooter to get me to the ball park. I am getting better. Life is love. Love is life. They both come together, perfectly.

Help Keep Horse Slaughter Out of the U.S.

Help Keep Horse Slaughter Out of the U.S.

In 2007, a hard-earned victory for horses in the U.S. was achieved: state-level legislation succeeded in shutting down the nation’s last three horse slaughterhouses. These foreign-owned businesses, located in Texas and Illinois, were economically draining, environmentally damaging and treated animals with exceptional cruelty. The owners paid no export taxes and little in income taxes.

Unfortunately, pro-horse slaughter legislation is on the rise. State governments all over the country are considering offering special protections, tax breaks and other incentives for horse meat processing plants to open.
Pro-slaughter legislation introduced this year includes:

Montana: In early May, MT passed a law to allow investor-owned horse slaughter plants to operate and prohibit courts from granting injunctions to stop or delay their construction.

Tennessee: State Rep. Frank S. Niceley has proposed amending a bill that has nothing to do with horse slaughter with language to pave the way for the construction of a horse slaughterhouse.

TN residents, take action

North Dakota: The Legislature and Governor Hoeven have approved a bill to spend $50,000 of taxpayer money to study the feasibility of opening a horse slaughter facility.

You can help keep horse slaughter out of the U.S. for good by urging Congress to vote for the

Prevention of Equine Cruelty Act.

This federal bill will criminalize the purchase, sale, delivery, or export of horses and horse meat intended for human consumption. If passed, it will override any state efforts to legalize horse slaughter for human consumption.

Gene for glowing passed along to monkey offspring

Scientists gave marmosets a gene that made their feet glow green, and one of the animals passed it along to its offspring _ the first time that an added gene has been inherited by a monkey. It was a milestone, experts said, that should make it easier to produce animals with versions of human disease for medical research.

http://www.washingtonpost.com/wp-dyn/content/article/2009/05/27/AR2009052702351.html

Family Matters

With several of his siblings diagnosed with Huntington’s disease, Robert Robinson and his wife, Laura, want to create awareness about inherited brain disorder.

http://www.theguardian.pe.ca/index.cfm?sid=255067&sc=100

Support HR 678

The below was posted on Hunt-Dis. The 2:39 minute video features, along with others, NYA member Misty Oto and is a reminder to support HR 678:"The Huntington's Disease Society of America is leading the fight to improve access to Social Security and Medicare benefits for people affected by HD. If you, a loved one or friend is affected by HD, please contact your Representative in Congress and urge him/her to cosponsor HR 678. For your Representative' s name and contact information,

visit

http://www.house.%20gov./

For a sample letter and other background materials, please visit

http://www.hdsa.%20org./

From: Joseph LaMountain <http://ca.mc564.mail.yahoo.com/mc/compose?to=joseph.lamountain%40gmail.com>

Fantastic News Coverage about HD Advocates!Dear All,Television station KGTV-10 in San Diego broadcast a news segment about HD and our efforts to pass HR 678! Clearly we are making progress! Here's a link to the video:

http://www.youtube.%20com/watch?

Please spread it to as many people as possible! We're now up to 20 cosponsors of HR 678. But we need more if we're going to convince Congress to make the bill law! Please keep encouraging your Representative, and others, to become a cosponsor!Many thanks to everyone that is making this campaign a success!

Joe Joseph La Mountain

Washington Representative

Huntington's Disease Society of America

Washington,DC202.288.512

"First they ignore you, then they ridicule you, then they fight you, then you win." -- Mahatma Gandhi

Looking after Trevor's Grandpa

Trevor's Grandpa is looked after by Trevor's Aunt and Uncle. They are going on a respite for a couple of days. We are going to give him his meds, feed him, take him to crib. We are doing this for two days. I am excited. We both enjoy him. He can't remember and has a life line, like mine. I love my new scooter. Trevor is really worrying about me, He is planning another huge surprise for the fall. I think it is another vacation. Live free. Live light. Let the worries get taken away. Worrying does no good. Worrying affects us. It consumes us. Don't let it consume and take over. Take over your life. Take it back.

Happy Memorial Day

Don't overlook sleep as a stress buster

One wise counselor made the comment that each of us is hanging by a thin thread, and it does not take much for that thread to break. I am astonished that more of us do not have an overwhelming physical and spiritual meltdown in light of the pressures from society, the demands of caring for children and elderly parents, and now, economic worries.

I for one know the importance of a good night's sleep. Scientists have documented that when we are sleep-deprived our immune system suffers; our thinking and judgments are impaired; and our fuse becomes very, very short. Sleep deprivation impairs our reflexes, judgment and thinking — not unlike what happens with a blood alcohol level approaching intoxication.

One lesson that I have learned: When I anticipate some challenging times ahead or an increase in demands and expectations, I try to be fanatical about "sleep hygiene." So, what does this mean? To me it means:

--Getting enough sleep. For me that means 7 to 8 hours.
--Having a bedtime routine. This does not include watching the news or some crime show, which are not conducive to a good night's sleep for me.

--Clearing my mind. Finding a way to put the worries and concerns of the day aside.
--Feeling thankful. Thinking back on events of the day for which I am thankful. Regardless of our circumstances, each of us can find circumstances and especially people in our lives for whom we should be grateful.

Happiness is what we live for

The hope is now. There is tons of treatments and cures. They are real. Hope is real. Happiness is a rain cloud away. Happiness is knowing, things will get better. HD does not mean we are going to die. It is not a death sentence anymore. Don't hear anything else. We know the truth. Count down for the cure is getting closer. We are a day away from possibilities. We are here. It is to know. The generations will stop. We can get them out of our genes. Cures are here. Enjoy the summer. Enjoy your life. Laugh life away. laugh, HD away. Live your life and enjoy what we have. Enjoy your dreams too. Make them come true.

Hikes

I went on two hikes this weekend. Trevor, Lucky and I had fun. It was a hot, perfect weekend for them too. One was interrupted, by a Grizzly bear. The Park ranger found us. They tranqed the bear. They thought it would be angry. We went home. We live in the mountain's. This is my first bear warning. The Terminator was good. We want to see Transformer's two, when it comes out. Alice is moving on Wed. Three hours is not that bad for distance. I love my new scooter. It is fun Trevor is teaching me how to drive. It is like the quads, back home. HI/LOW gears. The speed its the same way. I am not street safe. I never drove cars. He is teaching me that. We are learning turning. I am getting better. Tomorrow I take the Handi-Bus to PAWS. We don't trust me driving on my own yet.

Clinical Trials

Massachusetts

Boston : MGH - Massachusetts General Hospital New!
Creatine, Tolerability, and Efficacy in Huntington's Disease (CREST-E)
Boston : MGH - Massachusetts General Hospital New!
Premanifest Huntington's Disease: Creatine Safety and Tolerability (Pre-CREST)
Charlestown : Massachusetts General Hospital - East New!
Tissue Donation for Huntington's Disease

Virginia

Charlottesville : University of Virginia New!
Individuals who are affected by Huntington's Disease for a research study.

Updates

I updated my HD info page.

Scooter

I got my scooter today. It is a fun vehicle to use. I got it from Trevor's Dad, Terry. I love it. I will use it instead of the Handi-Bus to get to PAWS. I am still keeping active. Using my WII, walking. Some days I am more sick, and that would be the first thing I would use. I could see myself going on rides. It is fun and I enjoy it. Would love to take it out for drives in the summer. Enjoy the summer. Get outside. Have fun. Tomorrow we are going to Elizabeth Lake, in Cranbrook and also, seeing Terminator. We want to see Duck Island. Summer is here. Enjoy it.

HDSA events in June

CALIFORNIA

Monday, June 29, 2009
3rd Annual Mason-McDuffie Mortgage Golf Tournament- Northern California Chapter
For more information please contact:925-708-7178
Friday, June 05, 2009
Shoot for a Cure- San Diego
Saturday, June 20, 2009

HDSA Golf Classic- Northern California Chapter
For more information please contact:Isabel at icompton@hillcontractinggroup.com
Saturday, June 13, 2009

ILLINOIS

Saturday, June 27, 2009
Roller Derby for a Cure- Illinois Chapter
Save the Date for The Chicago Outfit's Roller Derby For A Cure - June 27, 2009!

Join us for HDSA's first roller derby fundraiser! The Chicago Outfit Roller Derby League will be hosting a brawl to benefit the Huntington's Disease Society of America in Illinois on Saturday, June 27, 2009. Please save the date and plan on joining us at The Windy City Field House, 2367 W. Logan Blvd., Chicago, IL. Tickets will be on sale through The Chicago Outfit's website:

http://www.chicagooutfitrollerderby.com/

The Chicago Outfit Roller Derby is an all-female roller derby team. They are a non-profit organization dedicated to contributing charitably to other non-profit organizations. They will donate 20% of their ticket sales from their June 27th bout to the Illinois HDSA. Please save this date and round up all your friends and family members and bring them to an exciting night of flat track roller derby! Bouts are at 7pm and 8pm. The Outfit is finalizing their game schedules for the 2009 season and will have more information about this fun evening in early May. Please check our website again for all the details!

MINNESOTA

Wednesday, June 24, 2009
Wade Wallen Golf Tournament
Crystal Lake Golf Club
16725 Innsbrook Drive
Lakeville, MN 55044

Additional Details:

Contact Information: Wade Wallen Golf Classicc/o TwinCitiesGolf.com9637 Anderson Lakes Parkway, Ste 102Eden Prairie, MN 55344
Questions?Virg Senescall, Tournament Directorsupport@wadewallengolfclassic.com

or 952-649-9898

NEW JERSEY

Monday, June 01, 2009
Golf Outing- NJ Chapter
Suburban Golf Club, Union, NJ
Wednesday, June 10, 2009
Volunteer Orientation Days - NJ Chapter
Held by Huntington’s Disease Society of America, NJ Chapter, NORWESCAP and the New

Jersey Foundation for the Blind, located at the Denville Office, 230 Diamond Spring Rd

OHIO

Saturday, June 27, 2009
Team Hope Walk- North East Ohio Chapter
Akron Zoo500 Edgewood Ave.Akron OH 44307For more information contact Jeanie Chresos at 216-351-3932
Friday, June 19, 2009
Golf, Rock and Bowl Classic
For more information please email wvaughan@columbus.rr.com

PENNSYLVANIA

Monday, June 01, 2009
Cure Classic Golf Outing- Delaware Valley Chapter
St. David’s Golf Club, Wayne, PA



Play a beautiful and award winning course, enjoy
great company and help the Cancelmo family
raise research dollars for Huntington's
Individual golfers at $300, Hole sponsor at $275.
Corporate sponsors to $7500.
Call 610.260.0420, for information.
Lunch, silent auction, cocktail reception, awards

RHODE ISLAND

Saturday, June 20, 2009
Team Hope Walk- Rhode Island
Colt State Park-Route 114
Bristol, Rhode Island 02809

Additional Details
Raffle Items
Balloon Artist
DJ
Each Walker receives a Free Walk T-Shirt
For every $1,000.00 an individual or team raises they will receive five (5) tickets to our New England Team Hope Walk Party.
To Download Brochure Please click here

Contact Information:
For more information or a brochure/pledge sheet
Go to our website at

http://www.hdsa-ne.org/.

Click read more… under Rhode Island Walk-A-Thon.
Or Call:
Virginia Goolkasian
978.454.8102 extension 13
vgoolkasian@hdsa.org

TEXAS
Tuesday, June 09, 2009
HDSA Celebration of Hope- Texas Affiliate

Researchers from Massachusetts General Hospital’s Institute for Neurodegenerative

Researchers from Massachusetts General Hospital’s Institute for Neurodegenerative Disease have developed a new strategy for treating Huntington’s Disease by showing that enhancing the acetylation of the HD protein will tag it for clearance through autophagy. Acetylation involves the attachment of an acetyl group to a protein to modify its activities.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=629

New Link

I added HD Australia website. It is brand new and very good. Full of useful info and articles.

I was right about tetrabenazine. It is bad

Now that tetrabenazine is available in the United States, many people with HD are taking a look at the drug and wondering if they should try it to reduce their chorea. A new study by Italian researchers analyzed the long term effects of taking TBZ in HD patients who were seen over time at a movement clinic. Sixty-eight patients were included in the retrospective study; they averaged 34 months of treatment. The researchers point out that the doctors started by prescribing low doses of the drug, given two or three times a day and titrating upwards. This is important to balance benefit with side effects. The study is a good complement to the double blind placebo controlled studies that were done prior to the FDA approval of TBZ and that the Lighthouse has covered. This study follows what happens with patients over time as they work to manage their condition with their doctors -- they had side effects, their doses were adjusted, and they were prescribed other medications as well. Seven percent of the patients did not benefit from TBZ and it was discontinued. Half of the patients reported at least one side effect and two of them decided to discontinue the drug. Chorea was reduced for the remaining patients, but the magnitude of the benefit was reduced somewhat over time despite increases in dosage.

Fun Rythmitic Gymanstics Demo

I had so much fun. It was a late night. We performing until 9:00pm. I had to come home and sleep and get to the Gleaner's at 7:30 this morning. That is why I did not blog. I did the sensible thing. We did rope, ball, ribbon, and hoop. Alice showed up. It was so much fun. There nust have been 40 people there last night. Today was the last one. We used our favourite apparatus. I used ribbon. It is my favourite thing. It is beautiful and flowing. I love that. After this, I will do Tee Ball on Wednesday at 3:30pm to 5:00pm. I used to play softball with my family. I love it. I am so excited to do it. The Special Olympics Relay For Life team is shaping up. I got 105 dollars to cancer. I am feeling good. My meds have kicked in. I am no longer feeling horrible. I fell yesterday in the tub. I also fell at Alice's place. We need a bath mat. I grab my bar and slip in the tub. I am getting the Handi-Bus to take me to PAWS. No one wants me to walk on the free way. Trevor will get me a pass. His arm still hurts. Live in life. Live for life. Life is what we make it. Life is how we live it. Life is key. Do you want pain? Do you want bliss? No one want pain and be unhappy. Join with me. Today some one new at the Gleaner's found I had HD.She thought it was horrible to happen to a young girl. I told her, it is not bad. I told her that life is how we live it. She was amazed to see me so happy and content. I could never be this way without my Trevor. I chose a great man who I love and makes me his number one. He never regrets marring me. You need support. We can't make it alone.

Team Hope Walking for HD

Four walk dates set:
NYC (Riverside Park) Saturday, September 12
Long Island (Belmont Lake Park) Sunday, September 13
Philadelphia (Montgomery County Community College) Sunday, September 13
Delaware (Glasgow Park) Sunday, September 27
To learn more about these walks and walks around the country go to

www.hdsa.org/teamhope.

You can register online and start a team today.

reform our nation's health care system

Hey guys, I got this message from the Obama people today and it gives you the opportunity to share your healthcare/insuranc e stories with Congress and the people who are trying to reform healthcare right now to help them try and understand how frustrating it really is to live with either your current insurance or no insurance at all. There's a link below if you're interested.

From: President Barack Obama

The chance to finally reform our nation's health care system is here. While Congress moves rapidly to produce a detailed plan, I have made it clear that real reform must uphold three core principles -- it must reduce costs, guarantee choice, and ensure quality care for every American.As we know, challenging the status quo will not be easy. Its defenders will claim our goals are too big, that we should once again settle for half measures and empty talk. Left unanswered, these voices of doubt might yet again derail the comprehensive reform we so badly need. That's where you come in.When our opponents spread fear and confusion about the changes we seek, your support for these core principles will show clarity and resolve. When the lobbyists for the status quo tell Congress to hold back, your personal story will give them the courage to press forward.Join my call: Ask Congress to pass real health care reform in 2009.After adding your name, please consider sharing your personal story about the importance of health care reform in your life and the lives of those you love.I will be personally reviewing many of these signatures and stories. If you speak up now, your voice will make a difference.

http://my.barackoba%20ma.com/HealthCar%20eOrganizing

American families are watching their premiums rise four times faster than their wages. Spiraling health care costs are shackling America's businesses, curtailing job growth and slowing the economy at the worst possible time. This has got to change.I know personal stories can drive that change, because I know how my mother's experience continues to drive me. She passed away from ovarian cancer a little over a decade ago. And in the last weeks of her life, when she was coming to grips with her own mortality and showing extraordinary courage just to get through each day, she was spending too much time worrying about whether her health insurance would cover her bills. She deserved better. Every American deserves better. And that's why I will not rest until the dream of health care reform is finally achieved in the United States of America.Please add your name to join my call. Then share your personal story about why you too will not rest until this job is done.

http://my.barackoba%20ma.com/HealthCar%20eOrganizing

Last November, the American people sent Washington a clear mandate for change. But when the polls close, the true work of citizenship begins. That's what Organizing for America is all about. Now, in these crucial moments, your voice once again has extraordinary power. I'm counting on you to use it.

Thank you,

President Barack Obama

NIH stem cell guidelines

Do you remember that Pres. Obama said that the NIH stem cell guidelines would go under review? Well as part of that review process, YOU areinvited to register your opinion with the NIH about what you'd like to seeas the guidelines for stem cell research. Don Reed's family was at the White House when Pres. Obama signed the stemcell bill that reversed federal funding for stem cells. If you want to readup on why it's important that you participate, you might want to read Don's blog:

http://stemcellbattles.wordpress.com

You only have until May 26 before the NIH public comment forum is closed. Ifyou just want to go check out the site here's the link:

http://nihoerextra.nih.gov/stem_cells/add.htm.

Your comment can be as long as you want it, or as simple as a sentence:"I support the position of the California Institute for Regenerative Medicine(CIRM) to improve the new federal stem cell research funding guidelines." CIRM is the world's largest source of embryonic stem cell research funding,internationally respected.

http://www.cirm.ca.gov/sites/default/files/NIH%20Comments%20NIH_guidelines%20v12_5_14.pdf

There are also several outstanding organizations that have articulatedpositions worthy of your considered support. For example, the world-renownedInternational Society for Stem Cell Research, (ISSCR), also has carefullystudied the issues involved. Their sample letter can be viewed at the bottomof this page

http://www.iascr.org/docs/May2009/IASCR_Summary_NIH_Discussion.pdf

Below is an email from the American's for Cures with some other suggestionsfor writing NIH.

Friendships: Enrich your life and improve your health

Friendships are good for your health. During hardships, they are a source of comfort and strength. Learn how to find and nurture friendships and how to be a good friend.

http://www.mayoclinic.com/health/friendships/MH00125

Blog: Sandwich generation — Don't forget to take care of yourself too

Sandwich generation — Don't forget to take care of yourself too

http://www.mayoclinic.com/health/sandwich-generation/MY00635

Slide show: How genetic disorders are inherited

http://www.mayoclinic.com/health/genetic-disorders/DS00549

Mental health: What's normal, what's not

Deciding what's normal mental health and what's not is tricky. See how feelings, thoughts and behaviors, as well as culture and society, determine what's normal and what's not.

http://www.mayoclinic.com/health/mental-health/MH00042

Anger management FAQ: The good, the bad, the ugly

Take a look at what causes anger, what makes some people snap, what anger management classes are all about and how to defuse conflicts.

http://www.mayoclinic.com/health/anger-management/MH00075

Demo

Tomorrow I have my Rhythmic Gymnastics Demonstration. It starts at 7:00. We have practice at 6:30. Trevor and Alice are coming to watch it. I am so excited to do it. I have been drooling. It is getting worse. I have been struggling with depression. I am waiting for the new meds to kick in. Trevor's took the weekend off to try and heal his arm. I will be getting a disability bus pass. I need to get to PAWS and the Gleaner's. Keep as active as possible. Walk, do everything you can. I still every day walk Lucky, use my WIIFIT. Keep running. Don't stop. Move as much as you can. Next month I go home. I see my Doctors', drop by and see my family. We are going to take Gary back here. We will take him camping, disability fishing, ad drive up Goat Mountain. Try not to give up. Fight on.

Live

Live and laugh. Love life. Take what happens. You own that. Own HD. Put it down where it belongs. Come up here and live. It is pure serenity here. We know no pain. We are too strong, to let HD take ourselves away. Fight for your last breath. Fight to stay alive. Be brave everyday. Bravery controls every hour, for us. Take HD away, 0ut of site, out of mind. You can live and love life. Love and cherish you're only life. Hope will retain your life. Hope, brings us pain free. We can live pain free. Have the chance, to take it away. Enjoy the sun. It takes away all of the pain. There is no pain where. No hatred. Let it all go. Run where the bliss is.

Vote No on Props. 1D & 1E!

Vote No on Props. 1D & 1E!
Why vote NO on Propositions 1D & 1E - two deceptive and harmful propositions on the May 19 ballot?
Prop. 1D cuts $268 million per year from children services like child abuse prevention, immunization and early childhood development, all created by Proposition 10 (November 1998).
Prop. 1E cuts mental health care programs demanded by the voters through Proposition 63 (November 2004) by almost a half billion dollars.

Both Props. 1D & 1E take money out of specific programs required by the voters and put it in the state general fund, where the Legislature and the Governor can spend it with no accountability.
That’s bad, but what’s worse is that both measures are like wolves in sheep’s clothing. The Legislature wrote Props. 1D & 1E to make them sound like they protect and expand services, even though they really cut programs.

Even in this difficult time, neither Prop. 1D nor 1E is necessary to balance the state budget. Together they would provide just one-half of one percent of state spending. But both Props. 1D & 1E would slash services for some of the most vulnerable people in our communities.
Now is no time to try to balance the budget in ways that harm children and the mentally ill. That’s why people and groups from many different backgrounds have banded together to form one campaign united to defeat Props. 1D & 1E.

Please get the facts about Props. 1D & 1E, and help us get the word out so we can defeat these measures. And vote NO on Props. 1D & 1E!

Illinois Chapter of HDSA's TEAM HOPE-Walk For A Cure.

If you live in the greater Chicagoland area, tomorrow, Sunday,

May 17, 2009,

is the Illinois Chapter of HDSA's TEAM HOPE-Walk For A Cure.

Come out and spend the day at beautiful Danada Farm in Wheaton, Illinois, and join other HD families for our 5th Annual Walk. Over the past 4 years, we've help raise over $162,000 for research, family care and education. Registration, at the Walk site, is $15.00 and includes this year's Walk T-Shirt, a family style picnic lunch, games for both adults and children, and a great chance to meet other HD families. Illinois Governor Pat Quinn has declared this weekend as HD Awareness Weekend in Illinois. We hope to have close to 400 Walkers. So far we have walkers joining us from as far away as Oklahoma and New York! Also joining us will be HDSA's new CEO, Louise Vetter. Please bring your own non-alcoholic drinks and a lawn chair. The weather looks great, and we hope to see you there!

Illinois Chapter TEAM HOPE-Walk For A Cure

http://www.hdwalk.org/

Ill.Chapter-HDSA Web Page

http://www.hdsa-%20il.org/

Sponsor Dave & Susie's Walk

http://www.firstgiving.com/DaveandSusie

New Photo's Page

I added a new photo page. It is me two years into HD. I want to show you all the stages and changes I am going through.

Happy Memorial Day

Happy Vctoria Day

Tee Ball

I got my upped meds today. I went to dinner with Trevor’s family. Alice is moving this month. Tomorrow we are going to the parade. After, we are going to go to see Star Trek. On Wednesday, I will be starting Tee Ball, at 3:30 to 5:00. I am excited. I loved playing baseball when I was little. My family, played soft ball. Keep on living. Keep alive. Keep the hope alive. HD is hope now. HD has hope now. Plan your future. Plan your life. Plan and live, like you are dying. Don’t give up yet. Fight HD, like you are fighting for your life. You are fighting for your health and welling. You life is what matters, enjoy your life. It is the only one we get, we don’t have another. Accept HD. Accept our life now. Accept the changes, we lead. The change that leads our life now. Take our life back. It is ours. Take it back. Take our happiness and hope back too.

Med Change

My meds need to be upped. They are driving me crazy. I am moody, irrational, angry, anxious. I have been having problems for a week now. We went and saw DR. Walker yesterday. He said he will up my Epival. It is rising to 500 instead of 250 in the afternoon. Trevor is on light duties at work. This weekend is the Bollsom Festival. They have a parade. I am also being forced to watch Star Trek with Trevor. We will go to Cranbrook, to watch that one. Accept your life. This is the way it is. This the real HD. This how we live. Our real life. We are all heroes’, living with this disease. I am Trevor’s hero. I don’t ever complain about anything. We are so stong. We can do anything.

Here are some other genetic disorders with symptoms like those of Huntington's Disease:

Here are some other genetic disorders with symptoms like those of Huntington's Disease:

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=495

Donate a Tree for HD

The Huntington’s Disease Society of America (HDSA) is the largest voluntary health organization dedicated to fighting HD. There is a clinic and research facility at UVA dedicated to providing support and treatment to help improve the lives of those affected by HD, which includes HD patients, their caregivers, and their families. I am a member of a local Virginia Beach support group for HD that meets monthly at the Virginia Beach Central Library.

We have found a great way to raise money for the research and clinic at UVA, in conjunction with Green Planet Fundraising, an organization dedicated to improving the planet one tree at a time. They are providing us with an environmentally responsible opportunity to raise money for research. For every $10.00 donation toward sponsoring a tree, HDSA will receive $5.00 toward their research program and clinic.

Green Planet Fundraising will then purchase, plant and maintain a tree. Why trees? Because, according to the USDA, one tree, over a fifty year period can provide over $162,000 of environmental benefits! That includes removing carbon and pollutants from the air, generating oxygen, stabilizing soil, and reducing rainwater runoff. The money raised by this effort will go directly to UVA and will be used to help fund continued research to find a cure for Huntington’s Disease. In addition, we will be supporting the clinic at UVA which provides services for HD patients and their families.

Donations may be made by

(1) cash or check to the person selling the trees. (2) by going directly to: _http://www.greenplanetfundraising.com_

where credit cards are accepted on a secure page. Please indicate your desire for the “Huntington’s Disease Support VB” to benefit from your donation.

(3) Checks may also be mailed to:

Green Planet Fundraising 1953 Country Manor Lane Virginia Beach,

VA 23456

Huntington's Disease Education DAY

Huntington's Disease Education DAYCo-Organized by the HDSA Upstate NY Chapter,

The Albany Medical College and The University of Rochester

Saturday, May 16, 20099:00 AM - 4:00 PM

The Century House

The Century House Hotel & Restaurant

997 New Loudon Road (Rt. 9)Latham, NY 12110

toll-free: (888) 674-6873

www.thecenturyhouse .com

Registration Fees: Before 05/07/09 $10/person,

After 05/07/09 $15/person.

Includes morning coffee & lunch. Walk-ins are welcome.

If you have questions or would like toinquire about scholarships, please call (585)341-7400

or email Amy at mailto:amy.chesire@%20ctcc.rochester.%20edu

The goal of this program is to reach out to those interested in learning more about HD.People with HD, caregivers, those at risk and health care professionals are invited to attend.

Schedule:9:00 - 9:15

Registration9:15 - 9:30

Welcome HDSA 9:30 - 10:15

Behavioral Features of HD Karen Anderson,

MDDept of Psychiatry and NeurologyUniversity of Maryland

10:15 - 10:45 A Personal Tale Katie MoserOvation Pharmaceuticals

10:45 - 11:15 STRETCH & BREAK

11:15 - 12:00 Reslience in HD David Rintell, EdDPartners Multiple Sclerosis CenterBrigham and Women's Hospital 12:00 - 12:30

Questions & Answers Faculty12:30 - 1:15

LUNCH1:15 - 2:00

New York in the History of HD Alice Wexler, PhD

Center for Women's StudiesUniversity of California, Los Angeles 2:00 - 2:45

BREAK OUT SESSIONS

A: Talking With Kids About HD - Bonnie Hennig, MSW, LCSW

Huntington' s Disease ProgramUniversity of Connecticut Health Center

B: Residential Care for HD - Sarah MillerLaurel Lake Center for Health and Rehab

2:45 - 3:30 BREAK OUT SESSIONS

C: Rehabilitation Therapies for HD - JoMarie Ethier, OTRStacy Vanderhorst, CCC-SLPAlbany Medical CollegeD:
Clinical Trials Update - B. Kelly Changizi, MDMovement Disorders CenterAlbany Medical College3:30 - 4:00 CLOSING COMMENTS/FUTURE DIRECTIONS

Health Care Reform

You are receiving this email because you signed up at WhiteHouse.gov. My staff and I plan to use these messages as a way to directly communicate about important issues and opportunities, and today I have some encouraging updates about health care reform. The Vice President and I just met with leaders from the House of Representatives and received their commitment to pass a comprehensive health care reform bill by July 31. We also have an unprecedented commitment from health care industry leaders, many of whom opposed health reform in the past.

Monday, I met with some of these health care stakeholders, and they pledged to do their part to reduce the health care spending growth rate, saving more than two trillion dollars over the next ten years -- around $2,500 for each American family. Then on Tuesday, leaders from some of America's top companies came to the White House to showcase innovative ways to reduce health care costs by improving the health of their workers. Now the House and Senate are beginning a critical debate that will determine the health of our nation's economy and its families.

This process should be transparent and inclusive and its product must drive down costs, assure quality and affordable health care for everyone, and guarantee all of us a choice of doctors and plans. Reforming health care should also involve you. Think of other people who may want to stay up to date on health care reform and other national issues and tell them to join us here: http://www.whitehouse.gov/EmailUpdates

Health care reform can't come soon enough. We spend more on health care than any country, but families continue to struggle with skyrocketing premiums and nearly 46 million are without insurance entirely. It is a priority for the American people and a pillar of the new foundation we are seeking to build for our economy. We'll continue to keep you posted about this and other important issues. Thank you, Barack Obama P.S. If you'd like to get more in-depth information about health reform and how you can participate, be sure to visit http://www.healthreform.gov/.

Michelle won!!!

My party lost by four percent last night. Michelle won our area!! A lot of the area was fed up with Campbell. She can advocate for us know. She can do great things. I was at the polls, scrutiner and taking votes. Terry was with Me. Went to paws. I loved it there. They have a cat helper there. I left early. The owner went to vote. Trevor's Mom is moving to Invermere. She has a job there, and a home care job. She got laid of her, she needed to move on. Trevor has Tedinitis in his right arm. He is on light duties. It is very painful for him. His high blood pressure is normal now. He is getting really burnt out too. Tomorrow I have to go to the Gleaner's and do Rythimtic Gymnastics. Live in a world of hope and peace. That is where we belong. Not in the shadows. We need sunshine. Not darkness. The light brings us to life. Alive is what we need to be. We need life, to survive. Fight for the light. Fight for the hope.

More updates

I updated my HD info page. I added inf about my bladder retention problem.

Bladder control problems: Medications for treating urinary incontinence

Bladder control problems: Medications for treating urinary incontinence

http://www.mayoclinic.com/health/bladder-control-problems/WO00123

Can you recommend a good anti-anxiety diet? Is it true that certain foods worsen anxiety and others have a calming effect?

Can you recommend a good anti-anxiety diet? Is it true that certain foods worsen anxiety and others have a calming effect?

http://www.mayoclinic.com/health/coping-with-anxiety/AN01589

Election

Every day Trevor has been worrying. He has to dress me on bad days now. He does not want to lose me. He worries more than I do. I have been drowning again. I have been oversleeping, it is killing me. I am volunteering at the polls tomorrow. I am volunteering with Trevor’s Dad. Trevor got called to work for four days this week. E.I. does not want to send us money too. They want proof of his info. I am also volunteering at PAWS. I am so excited. I hope the NDP will win. Trevor thinks they will. Accept HD. Move on and start living. You need to own it. You need to admit it. You need it to help you have a happy, hopeful life. You need the both, of them to stay and fight. Fighting is the only way we live. Every day is a new day to just survive. Live and learn how to fight. How to know, that there is a future. The Generation’s will stop.

Preventing HD

Hayden has implemented the human HD gene in YAC 128 mice, and he has good results preventing the disease from breaking out by the use of drug therapy. The mice was treated very early in the disease course. In short, the process goes on to block the enzyme Caspase 6 in the "cut" of the htt-protein. Next step for Hayden and his collegues is to test the treatment on the HS-patients. Hayden wants to collaborate with other medical environments, and he will conduct the experiment in several places in the world. He is in the beginning phase of planning of the experiment, which he expects will begin end 2009 or 2010. Please notice that the treatment includes approved drugs so it is not an extensive approval process. This means that if Hayden can take lessons from mouse to humans, the medicine could be used on humans in a short period of time – he assumed 3 years.

My Mom

I always brought Mom roses on Mother’s Day. I also brought her roses on her birthday. My Mom loved roses. I miss my Mom so much. It is not the same without her. There is only one Mom in the world. I have so many fond memories of her. All of the fun times, we had. All of the times I went to look after her. Soon as she saw me coming, she had a big smile on her face. She had the most beautiful smile. I would always make things and bring them in. I loved her more than anything. I always will. She keep alive in my mend and in my heart. Forever and ever my Mom. Can never let her memory die.

Happy Mother's Day

NDP must win

Today we went to the NDP pot luck and auction. We went with Trevor’s Dad. They had a bake sale. He bought three pies and bought Trevor a new summer jacket. I got to meet other NDP followers. I talked to Michelle, who up for our MLA. She was in tears when we told our story. She recommended an advocacy group in Nelson. If she gets elected, she will help us herself. All three of us signed up to be going out to get votes for the NDP. We are also going to run the polls. Tuesday is the election. Michele is sweet. I was the first person to volunteer. She is angry at what BC has become. Senior’s here are losing the benefits too. There was a lot of them there. I am hoping and praying NDP takes it. We are hopeful for once. We believe that they can help us. We can all get the money we need.

Phosphatidylserine supplements: Can they improve memory?

Can phosphatidylserine improve memory and cognitive function in people with Alzheimer's disease?

Phosphatidylserine (fos-fuh-tie-dul-SEHR-een) is a dietary supplement that has received some interest as a potential treatment for Alzheimer's disease and other memory problems. Several studies involving phosphatidylserine indicate a benefit — improved cognitive abilities and behaviors. However, improvements in memory lasted only a few months and were seen in people with the least severe symptoms.
Initially, phosphatidylserine supplements were derived from the brain cells of cows. Because of concerns about mad cow disease, however, most manufacturers now produce phosphatidylserine supplements from soy or cabbage derivatives. Early studies, though promising, were based on cow-derived supplements. It's not known if plant-based phosphatidylserine supplements offer any benefits.
Keep in mind that the Food and Drug Administration doesn't require manufacturers to provide evidence of the potential risks and benefits of phosphatidylserine — or of any supplement. Consult your doctor before starting any dietary supplement.

Dinner

I had an NDP dinner tomorrow. At 5-7. We get to meet Michelle. She is running. It is a bar barbeque. Creston is begging for the NDP to make it better. Everyone is excited that I am going to volunteer for PAWS. I have always loved animals. I get that from my Mom. Dad is super excited too. The sweet people bought my 3 spring jackets and hoodie. My spring jacket broke. We had no money for another one. I went here today, they were all worried. This bother’s other people worse than me. I watched the dog whisper today. He had adoption rules for shelter animals. You need to have the same energy dog as you are. If you are active, a slow dog is not good for you. I raised 85 dollars so far today for cancer. Accept and learn from life. HD is a lesson. We learn how to live life. We learn what strengths we have. We grow. We have a demonstration of Rythmitic Gymnastics on the 22, at 7:00pm.

PAWS

I went to the dentists today. They saw me and Trevor as the couple form 50 first dates. They thought he would make me a movie every day, on how to brush my teeth. They will think of Trevor and me when they watch it. They thought it was horrible that I had dementia so young. I joined the Creston NDP party. Trevor and I are going to pot luck to meet Michelle. She is running for our rep. She is young and very nice. I have my badge. Put up my sign. This election will make our break our province. Right now if I fell, they could not haul me I an ambulance for free. They lay off nurse’s’ like Alice. The forestry sucks, it is because of them that this happened. I am so excited. I am volunteering at PAWS, the local animal shelter. What is sad, they had a hard time getting people to work with the animals. I go there on Tuesday. I will be in charge of filling and making adoptions. They are making a shelter. Soon as it is up, I get to be with the animals. Rythimtic Gymnastics, we are doing a Creston demo. We talked to Jim Abbot. We will get 50 dollars a month. My Dad said takes it. They can always give us more. Things will always work out. Time will tell how things will go. Keep waiting. It will happen. Our future has to get better. It will get better.

Updates

I updated My Story

Amaryllis 2009

Amaryllis 2009

Now that spring has finally arrived, it’s time to celebrate by thinking about our signature Amaryllis plants coming into bloom. This annual fundraiser raises over $100,000 each year and provides much needed funding. With your support – and the dedication of other Amaryllis volunteers like you –our Amaryllis fundraiser raises critical funds for research, services, and education in the fight against Huntington disease.
Enter To Win!The 2009 Amaryllis campaign is well underway. To build momentum for this critical fundraising program, HSC is currently inviting people to participate on this year’s Amaryllis “team”! Please consider joining the Amaryllis Team and enter for your chance to win a $100 gift certificate at a local nursery. Orders can be placed by visiting the HSC website at

https://dnbweb1.blackbaud.com/OPXREPHIL/Link.asp?link=355688 Details of the contest are listed below.
Place An Order The online order form is both secure and efficient, making it easy to place order for yourself, family and friends. Just visit the HSC website to place an online order, or send an e-mail to amaryllis@huntingtonsociety.ca or phone 1-800-998-7398. For those who have additional questions about the Amaryllis contest, feel free to contact us by phone or e-mail.
Growing Our CampaignOur goal this year is to “grow” the number of orders over last year’s total and raise more funds than ever before. Increasing your sales is quite simple – if you could sell just one additional kit to each person who bought an Amaryllis plant last year, you could maximize your order! Or join our corporate amaryllis campaign by identifying organizations that might be interested in selling amaryllis or giving them to prospective clients or loyal customers. Realtors, Financial Planners, Banks, and Insurance Agents all might be willing to give Amaryllis’ away as a gift to customers as it’s a win-win proposition. The client is thanked, the company that gave the amaryllis is thought of over the six week growing period, and Huntington disease wins as the more successful our campaign is the more will help to advance our efforts in research, services and education. Each time an order is placed for an Amaryllis kit, it brings us one step closer to finding a cure for HD.
Our boxed Amaryllis kits make wonderful gifts and come complete with one high-quality Orange Sovereign bulb, growing instructions, soil, pot, and saucer – all packaged in an attractive gift box. Bulbs can be planted immediately or stored in a cool, dry place for holiday gifts. Approximately six to eight weeks after planting, you’ll be rewarded with those signature orange-red blooms that are guaranteed to brighten any room!
Delivery Dates Amaryllis will begin to arrive during the week of October 12, 2009, can be ordered to sell in your community – and we can help you every step of the way – or you can simply order a kit or two for your own enjoyment. Deliveries to the location of your choice are available on Wednesdays, Thursdays or Fridays until December 4, 2009.
Contest Details Order and WinPlace your order, before May 28th at 5 p.m. eastern standard time and enter to win a $100 gift certificate to a local nursery. The draw will take place on May 29th and the winner will be notified on May 29th by telephone. Just place your order on the HSC website

https://dnbweb1.blackbaud.com/OPXREPHIL/Link.asp?link=355691 and your name will automatically be entered to win.
Join our team and watch our Amaryllis sales soar!

NeuroSearch demonstrates the potential of ACR16 as a novel treatment for Huntington’s disease

Today, NeuroSearch presents data on the mode of action and the preclinical pharmacology of ACR16, demonstrating the unique functional activity of the company’s novel drug candidate in development for Huntington’s disease.

http://www.pipelinereview.com/index.php/2009042926657/Small-Molecules/NeuroSearch-demonstrates-the-potential-of-ACR16-as-a-novel-treatment-for-Huntingtons-disease.html

NDP

I am going to start fundraising for cancer. Alice will be my first donor. Trevor's Uncle got prostate cancer. I can walk for him too.Tomorrow, I go to the dentist. I have a hard time remembering to brush my teeth, that is why it is important for me to get them clean. I get to go to the Gleaner’s tomorrow to get our MP’S number and address. Something amazing happened. We ran into a member of the NDP party outside on a walk. We talked to him. He gave us Michele’s number. They are running a Provincial election here. We get to get a hold of her tomorrow. Her office is in Creston. He gave an NDP party badge. They are the socialist party in Canada. The election time, people are willing to do anything to get elected. Trevor fixed his Mom’s computer. She took us out for Chinese food. On Friday we are going to see Star Trek. Everything works its way out. Times are good again. I believe all of this can get us back on disability. Believe. Never lose hope. Never lose sight of the future. It works out. Let everything slide. Hope will guide us. We are guided to hope. Hope defines us. Never lose it. Never get rid of your hope. It is all you need to survive.

The Huntington's Disease Society of America Celebrates Mothers Day

The Huntington's Disease Society of America Celebrates Mothers Day!Make your Mother's Day Flower purchase through the following links and HDSA will receive a donation for every order placed.FLOWERPETAL. COMAs a benefit of being a valued supporter of Huntington's Disease Society of America, there is no charge for flower delivery (a $10 savings). It’s a small token of appreciation for all you do to help.

http://hdsa.flowerpetal.com/FTD.COM
To make your flower purchase through Ftd.com go to www.ftd.com/ hdsa or call 1-800-SEND FTD and mention code #3015 when purchasing.This message sent byHuntington's Disease Society of America, 505 Eight Avenue, Suite 902, New York, NY 10018

Need some hope

My drooling is getting worse. I have been anxious and having mood swings lately too. We are getting screwed from the government, they took away my disability. Trevor got EI once; they are still not paying up. We are going to have to go to the MP, to get any action. If that does not work, we go to the NDP party. They are who I vote for in elections. They love to help the helpless and take on causes like ours. Trevor had a job interview at Mutli tech. It is a computer company that our friend runs. This all has to get better. It will go up. Lives can be harsh. Never lose sight of that light of hope, That is what drives us. That is what makes us tick.

HSC Reach for the Summit: Huntington Disease & Family Day Conferences

St. John’s ◍Moncton ◍Ottawa ◍Peterborough ◍London ◍Winnipeg ◍Saskatoon◍ Calgary ◍Edmonton ◍Vancouver ◍ Victoria
A nationwide project designed to bring the best of local and international HD expertise to a community near you! 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, working in conjunction with the Faculty of Medicine at the University of Ottawa with the collaboration of the Centre for Mediated Teaching and Learning, part of the Teaching Support Service at the University of Ottawa, is taking a bold new approach to reaching families and professionals in their own communities. We're combining local programming with interactive videoconferencing that lets you ask questions and hear other audience members across Canada while you stay close to home.
“At the Family Day last year it was amazing to be in Toronto and be able to watch and listen to someone in Ottawa pose a question to a researcher in Vancouver. It was as if the whole country was brought together in one room. The presentations were very informative and the videoconferencing made it feel up close and personal.”

http://www.huntingtonsociety.ca/english/content/?page=104

HDSA will recognize and celebrate May as Huntington’s Disease Awareness month

HDSA will recognize and celebrate May as Huntington’s Disease Awareness month
We are pleased to announce that HDSA will recognize and celebrate May as Huntington’s Disease Awareness month with the debut of a new TV and Print campaign featuring Olivia Wilde, who plays “13” on the hit show House, and her co-star, Peter Jacobson, (“Dr Taub”). They will appear in a 30-second PSA and Print Ad designed to build awareness of Huntington’s Disease (HD) and how the value of HDSA research and care programs goes beyond those affected by HD. The print ad appears below. To view the new commercial go to

www.hdsa.org/

mayawareness
In addition to participating in one of the many local events scheduled this month (www.hdsa.org/ events/), we encourage you to advocate on behalf of HR 678, the Huntington's Disease Parity Act of 2009. You can do this by visiting

www.capwiz.com/

hdsa to find your Representative and send a letter in two simple steps.

At www.hdsa.org/ takeaction you can learn about other steps you may take to advocate for the passage of this key legislation.
We encourage you to utilize the fact that May is Huntington’s Awareness Month as a way to open up a dialogue with your friends and colleagues about Huntington’s Disease, and the HDSA programs of research, care and education. Explain to them that the discoveries made by our scientists are valuable to researchers working to understand and treat many other diseases. Invite them to attend an event, participate in one of our upcoming walks, or to visit our website,

http://www.hdsa.org/

to learn more about HD and how the 40 HDSA Chapters and Affiliates are providing much-needed support to families facing the daily challenges of Huntington’s Disease.
If you have any questions, or would like to request additional materials, please visit the HDSA website, or send us an email at hdsainfo@hdsa. org
Heather