Huntington's+Disease+Society+Recommendations+to+Congress

**NEWS!!** ** We have 64  / 81 / 110 co sponsors in Congress for HR-678 **.
Dear Friends,

My name is Marie Clay and I am a citizen of Virginia who is looking for state-wide support. My husband, Phillip W. Clay, retired Sr. Navy Chief, died from Huntington’s Disease. Our daughter, Laurie, age 38 has inherited the HD gene and has slowly lost many abilities that we take for granted. Laurie has a son that has a 50% chance of inheriting the same gene.

Huntington's Disease (HD) is a relatively rare disease, affecting approximately 30,000 individuals in the United States. Some people liken HD to ALS (Lou Gehrig's Disease), Alzheimer's, Schizophrenia, and Parkinson's all rolled into one. Each child of an HD affected parent has a 50% chance of inheriting the disease. That is why HD destroys entire families.

I am part of a Delegation that has made two trips to Capitol Hill to lobby the Virginia Congressmen to co-sponsor H.R. 678, the Huntington’s Disease Parity Act of 2009. HR. 678 will require the Social Security Administration to update the medical criteria for Huntington’s Disease. It will also waive the required two-year wait for Medicare benefits to start (this is already waived for Lou Gehrig’s Disease).

This past Thursday, I, along with six other individuals, went to Capitol Hill to lobby Senator Webb to introduce a companion bill to H.R. 678 into the Senate. We met with the Health Representative for Senator Webb and she was very sympathetic to our plight. However, Senators are faced with many bills to support and it is crucial that we follow up and let Senator Webb know that the people of Virginia back us on this issue. The most powerful voice to the Senator is the voice of his Constituents as a whole.

I have included the Huntington’s Disease Society of America’s brief description of our cause and the petition. We are asking people to consider signing their names and addresses. If people are uneasy about signing an address, a county and zip code will suffice. You do NOT have to be 18 years old to sign the petition. As long as the signee can sign their name and write their address, they can be a part of this petition.

We would be more than thrilled if you would support our effort. We are trying to get 1,000 signatures or more within 30 days and when we do, we will contact Senator Webb’s office once again to show him that Virginia cares about their fellow Americans and they are looking to him for leadership and support on this issue.

Anybody at all can sign this petition. Spouses, parents, kids, coaches, teachers, teammates, co-workers, your mailperson, hairdresser, anyone at all! It would be great for classrooms learning about how our Government works! Once you have collected your signatures, please mail them to me at: Marie A. Clay 1492 Collingswood Trail Virginia Beach, Va. 23464 If you would like me to provide postage ,please let me know. It would be my pleasure..

This is a chance for our voices to be heard and for us to take part in getting extremely important legislation introduced. Please help us and thank you so much for your support!

Marie A. Clay Return document to Marie when you have gotten your signatures.** Marie A. Clay 1492 Collingswood Trail Virginia Beach, Va. 23464
 * Click below to download the letter and signature pages.**
 * [[file:SenatorWebbpackage.doc]]