Political Advocacy

Advocacy opportunity for Stem Cell Research

Submitted by Steve Ireland on Wed, 05/20/2009

Jean Miller

Reposted from HDCaregivers 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 are invited to register your opinion with the NIH about what you'd like to see as the guidelines for stem cell research. Don Reed's family was at the White House when Pres. Obama signed the stem cell bill that reversed federal funding for stem cells. If you want to read up on why it's important that you participate, you might w

Letter to President Obama on H.R. 678

Submitted by Steve Ireland on Mon, 05/11/2009

Patty

Dear President Obama, I saw an article on CNN.com today about “Weeding the budget of $17 billion”. I agree this is necessary but I’m scared it will have a major impact on many lives, mine included. I have been married for 26 years and I have Huntington’s Disease. Sadly, many married people in the HD community are resorting to getting a divorce just so the person with HD can qualify for Medicaid and get treatment. Let me explain. HD is like Alzheimer’s, ALS (

A Day on Capitol Hill

Submitted by Steve Ireland on Mon, 04/06/2009

Tim and Karen O'Neil

We signed up to be HDSA’s advocates a few years ago. We sent in our letters to elected officials some of the time when we would receive our HDSA advocacy alert emails. We recruited friends and family to contact their legislators regarding GINA (Genetic Nondiscrimination Act) and were delighted when it finally passed. When the HDSA advocacy team made H.R. 678, the Huntington’s Disease Parity of Act of 2009 a priority last year (original name, but H.R. 6259 in 110th Congress), w

Using the Neuropsychological Exam and Other Tools To Help Those Struggling With the “Softer” Symptoms of Huntington’s Disease

Submitted by Steve Ireland on Tue, 10/07/2008

Phil Hardt

%BL%Over the last seven years I have had the privilege of assisting hundreds of person’s with Huntington’s Disease (Phds) get the Social Security Disability (SSD) and Long-Term Disability (LTD) benefits they deserved after being initially denied; helping those who were “wrongfully” arrested, accused or crimes, and even kicked out of grade school because of Huntington’s Disease (HD) and Juvenile Huntington’s Disease (JHD); and helping family members understand

Extra payments to Medicare Advantage plans to total $8.5 billion in 2008

Submitted by Steve Ireland on Sat, 09/06/2008

Marsha L. Miller, Ph.D.

Marsha@hdlighthouse.org

Overpayments will remain significant even after payment reductions in new Medicare legislation are implemented New York, NY, September 5, 2008—Private Medicare Advantage (MA) plans will be paid an average 12.4 percent more per enrollee in 2008 compared to what the same enrollee would have cost in the traditional Medicare fee-for-service program, according to a new report from The Commonwealth Fund. Even if the payment reductions to MA plans mandated by the Medicare Improvements for Pati

The FDA Advisory Committee Meeting on TBZ

Submitted by Steve Ireland on Thu, 12/20/2007

Eric Waycott

The news has been reported. The FDA advisory committee has unanimously voted to recommend approval of tetrabenzine (TBZ) for use in treating chorea of Huntington's disease sufferers in the United States. This may be the first example I know of where the HD community made the actual difference in decision making. I will touch on this in a bit. I will also give my impressions of the panel of the FDA committee. I also want to recognize the personal testimonies of those who bravely spoke for us to

FDA Hearing on Tetrabenazine scheduled for December 6, 2007

Submitted by Steve Ireland on Mon, 10/29/2007

HDSA

sluis@hdsa.org

We have received confirmation that the FDA Advisory Committee hearing for Tetrabenazine (Peripheral and Central Nervous System Drugs) will take place on December 6, 2007 from 8:00 a.m. – 5:00 p.m. at the Sheraton College Park Hotel in Beltsville Maryland. The Open Public Hearing which provides patients, caregivers, physicians, and advocates an opportunity to address the Advisory Committee will take place from 1:00 – 2:00 p.m. Ideally we would like to pack the Ballroom at the Sher

Mandate for Public Access to NIH-Funded Research Poised to Become Law

Submitted by Steve Ireland on Wed, 10/24/2007

Marsha L. Miller, Ph.D.

Marsha@hdlighthouse.org

Full U.S. Senate Approves Bill Containing Support for Access To Taxpayer-Funded Research Washington, D.C. – October 24, 2007 - The U.S. Senate last night approved the FY2008 Labor, HHS, and Education Appropriations Bill (S.1710), including a provision that directs the National Institutes of Health (NIH) to strengthen its Public Access Policy by requiring rather than requesting participation by researchers. The bill will now be reconciled with the House Appropriations Bill, which contain

Hitler's 'Cure' for Huntington's Disease

Submitted by Steve Ireland on Mon, 04/02/2007

Phil Hardt

phardt1@cox.net

Nazi Racial Hygiene Two weeks ago, while my fianc? Dina and I were in Washington D.C., for advocacy training, we took time to visit the United States Holocaust Memorial Museum and found something very interesting about Huntington’s Disease. %CRY% While proceeding through the chronological exhibits Dina happened to read about the July 14, 1933 Sterilization Law, one of the first laws Hitler implemented after ascending to power and taking control over Germany. It was called the “

Advocate for the Genetic Information Nondiscrimination Act of 2007

Submitted by Steve Ireland on Tue, 01/23/2007

Steve Ireland

stevei@hdac.org

Advocacy Alert From HDSA Dear HDSA Advocates: As you know, fighting for legislation that would protect against genetic discrimination has been the cornerstone of our advocacy efforts. With a new congress, this year is shaping up to be the most exciting year, in our fight, to date. On the evening of January 16th, 2007 the “Genetic Information Nondiscrimination Act” (H.R. 493), also known as “GINA,” was introduced in the House with 143 cosponsors! This legislation, a