Taking Action

Huntington’s Disease and Social Security Disability Benefits

Like many other illnesses, Huntington’s disease can strike without warning—changing a person’s life forever. In the days, weeks, and months following a diagnosis of Huntington’s disease, it is important to plan for the future. Although it is important to discuss medical and supportive care options, you should also make financial plans.

If you or a loved one has Huntington’s disease, it may become necessary to apply for Social Security Disability benefits. Disability benefits can provide financial support to those who can no longer work due to disability or illness.

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

Using the Neuropsychological Exam and Other Tools To Help Those Struggling With the "Softer" Symptoms of Huntington's Disease

%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

Phil Hardt

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.
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