Political Advocacy

Advocacy opportunity for Stem Cell Research

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

Jean Miller

Letter to President Obama on H.R. 678

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

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

Tim and Karen O'Neil

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

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

Marsha L. Miller, Ph.D.

The FDA Advisory Committee Meeting on TBZ

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
Eric Waycott

FDA Hearing on Tetrabenazine scheduled for December 6, 2007

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

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
Marsha L. Miller, Ph.D.

Hitler's 'Cure' for Huntington's Disease

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 “
Phil Hardt

Advocate for the Genetic Information Nondiscrimination Act of 2007

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
Steve Ireland

Mitchell Urges Support of Stem Cell Research

WASHINGTON, D.C. - U.S. Rep. Harry E. Mitchell today used his maiden speech on the floor of the U.S. House of Representatives to urge Congress to pass and the President to sign H.R. 3, the Stem Cell Research Enhancement Act of 2007, of which Mitchell is a co-sponsor. Mitchell made the following remarks: "Just a few months ago, the American people sent a clear message to Washington: it is time to expand our investment in embryonic stem cell research. "I heard that message loud and clear
Marsha L. Miller, Ph.D.
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