Huntington's Disease Society of America
25 Members
Created by Sahar Hafeez

Effectiveness of the HDSA

The HDSA has chapters and affiliates in almost every state in the country. It's a non-profit national organization and its mission is to find a cure for Huntington's Disease. They provide research, support and educational services to improve the lives of those afflicted by Huntington's Disease.

 

What do you all think of this association? Do you think that it is it an effective one?

25 months ago
Results 1 - 1

  • Jean E.

    Hi Sahar, and welcome as one of the new WeAreHD Community Support Officers!  You and Stephan have been quite busy making a lot of changes!

     

    I noticed that you are the one who started the HDSA Community page on WeAreHD and have been providing a lot of articles and resources and yet you have no association with HD other then having taken a neurology course on it in college and becoming involved on this site.  I just wanted to say I'm glad to see any young person taking such an interest in HD because it will be your generation who can help make changes in the future affecting all HD families! 

     

    You ask: what do you think of the HDSA and do you think it is effective.

     

    I'm the Patient Advocate for one of the HDSA's Centers of Excellence, USF in Florida. This CoE has over 600 people with HD as patients and is staffed with one full-time person and several part-time professionals.  They see patients twice a month as well has handled hundreds of telephone inquiries each week.  They also hold several HD support groups throughout the month in varying locations scattered around Florida. Unless there is some dramatic changes in a patient, most people with HD probably go to their CoE at least twice a year, some maybe more often.  Like every Center of Excellence, ours is funded $50K a year from HDSA.  If anyone does the math, in our case that comes out to around $84.00 per patient per year.  If anyone think that covers the cost, per patient, of seeing a neurologist, psychologist, psychiatrist, physical therapist, social worker, etc. etc. twice a year then they're either smoking something funny or not from the US!

     

    So, in my personal opinion, the HDSA and it's Centers of Excellences and Chapters/Support groups is our only national organization for US HD patients and families.  They're doing the best job possible considering most of the money national takes in goes towards HD research and the fact that both national office and most CoE's are understaffed!  However if more people would help support their HDSA Centers of Excellence by making personal donations to them for their services, it would be a good start at improving available resources for HD families in the US!

     

    I, for one, am interested in your opinion?  Have you had any experience with national or any of it's sub-tiers?

     

    Thanks!

    Jean

     

    P.S. - You might want to consider joining the HDSA National Youth Alliance [NYA} as a friend and see how you can help get involved changing the future!

    25 months ago

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