Saturday, May 16, 2009

Results of HD Advocacy Poll

I conducted an informal poll on a few sites. Although I haven't assimilated the information nor even added my own thoughts to the list, I thought I'd take the liberty of publishing a summary of what I received. Feel free to add your own ideas as a comment to this post. Or add them to the thread on,53365. I'll be providing the requests in some fashion to HDSA.

Family Services

  • HDSA should offer more comprehensive services such as the Muscular Dystrophy Association does (

  • Internet support services

  • Assistance with social security, insurance applications to insure that families are providing the information needed to do it right the first time.

  • Speaking out for the rights of those who cannot or are too shy to do so.

  • Assistance with locating nursing homes and care facilities that will take HD patients. Finding “Medicaid” beds for HD patients is a particularly onerous problem.

  • Information and assistance with estate planning for HD families.

  • Better support for families to help then take care of pHd’s.

  • More support and services to be provided to the Juvenile HD community.

  • More child oriented services for HD families. (Such as “How to tell the children”) Educating parents on how HD in a parent may impact children.

  • Education services for the spouse. Preparing the spouse to deal with the various problems that arise in HD marriages.

HD Awareness

  • HSDA should sponsor HD Families Awareness events. Not a fund raiser, but a picnic where HD families can meet others in the community. They can be used to identify future volunteers.

  • Assistance with coordinating local HD awareness for hospitals, emergency rooms, nursing homes, police stations, ambulances, etc.

  • Public service announcements explaining HD

Political Advocacy

  • Support local political advocacy. Assist with finding the right person to contact. Providing information to assist with the contact.

Chapter / Affiliate / National Youth Alliance Services

  • More support and services to be provided to the National Youth Alliance.

  • More 'after' NYA age group services, adults over age 29 who are unmarried and concerned about confidentiality, applying for LTC and LTD and life policies and are worried about marriage and having a family.

  • HDSA needs to encourage chapters to expand their influence by enabling them to use a larger percentage of locally raised funds to provide local services.

  • Chapters need more lead time on National initiated projects.

Fund Raising

  • HDSA needs to encourage more affordable “fun” fundraisers that are affordable to HD families. There shouldn’t be a minimum on donations for these events.

  • HDSA should have a “how to” training package ready to go – both in hard copy and online.

Medical Services

  • Better healthcare facilities for HD patients. Designing and building a center in every state that has the capabilities of the best of the best.

  • The creation of a medical group to focus on a more coherent treatment plan from neurologists.

  • We need HDSA to establish some medical education program that encourages “family care”. There is nearly always an impact on the physical and mental health of the caregiver and children. It should be treated as “not my problem” by the HD patient’s doctor.


  • HDSA needs to play an active role in encouraging collaboration with other HD organizations (HDF, CHDI, etc).

  • HDSA needs to be funding more cutting edge research.


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