Saturday, May 16, 2009

Types of HD Advocacy

One of my objectives in the "What is HD Advocacy" survey was to get a clear picture of the types of advocacy that were of concern to HD families. So far they break down as follows.

Family Services - This was the area of greatest concern to the most respondents. This wasn't unexpected because of the amount of pain associated dealing with unbelievable bureaucracy, anti-social behavior, and most often having a lack of information needed to cope well.

HD Awareness - We seem to have two opportunities in this category. The first is to make law enforcement professionals aware of the degree and nature of mental issues associated with HD so that they can deal with it appropriately. The other goal seems to set an environment where HD families can network with each other.

Political Advocacy - HDSA has already started doing some great work at the national level and if you haven't signed up to be an HDSA advocate you should do so, but there seems to be many individuals asking for leadership, guidance, and education for local advocacy. There are also many social service issues impacting the caregiver's ability to get appropriate care for the HD patient.

Medical Services - In my fantasy every physician is current with the latest HD research, knowledgeable about medications used to effectively treat HD symptoms, and listens carefully to both the HD patient and the caregiver. The physician and the neurologist work together as effectively as a SEAL commando unit. They can sign HD patients up for clinical trials at a moments’ notice. However, the one story that keeps being told over and over again is that the doctor doesn't hear the truth about what's going on because the doctor leaves the caregiver outside of the realm of patient care. Thus the doctor often doesn't hear the truth because the HD patient prefers to leave the doctor with the impression that he's doing very well even when it's not true.

Research - This used to be a big topic because HD patients were not seeing a coherent plan that moved us forward toward effective treatments. The plan that CHDI put forth mitigated a lot of the anxiety that HD families felt but HD families still need to know that their voices are being heard by researchers. We need to know that the researchers understand what's going on in HD families, and we want the researchers to know how much we appreciate their amazing efforts.

Fund Raising – Many HD family members would do a fund raiser if only they had someone to hold their hand through the first one and prepare them to do the next one on their own. HDSA can help in this area by insuring that the material and coaching is readily available.

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.

Wednesday, May 13, 2009

Telling others what HD is all about - Awareness

I remember listening to a "how to improve communications" CD, and one of the tricks discussed was to open the brain gates of the listener by placing mental images in their mind, painting the context for the question you want to ask or the point you want to make.

We can be more effective in getting help for ourselves if we first insure that those we are going to approach have a clear and accurate picture of HD. This would seem to be the first step toward improving services for the HD community.

We have many marvelous heroes who have stepped forward to share their HD experiences with their friends and their community and to make clear the devastating impact it has on both the patient and the HD family. This aspect of personal advocacy is more important than you might first believe. It lays the foundation on which other types of advocacy can build.

Also, it’s nice that the entertainment industry finally discovered HD and is starting to write HD into their story lines. Call me a cynic, but this only seems to be mildly useful because it doesn’t paint that accurate mental image of HD that we need – or at least I haven’t yet seen a TV show that provides insight into life with HD. But what it does seem to do is encourage local cable stations to provide opportunities for HD families to discuss their experiences through hosted TV shows. An alternate media opportunity is the collection of personal video clips that HD families have put together and posted on Search on Huntington disease and you’ll find around 300 clips. Pick a few that tell the story you want to share and forward those to your friends and neighbors. You might even consider putting together your own. Several of those I’ve seen are very impressive and it seems like a good idea to forward a couple to your local radio or TV station when you ask them to add an interview with an HD family to their schedule.

Another media project in development, that if successful, will be a big win for the HD community is a project calling itself the Huntington’s Disease Documentary Project. You can read more about it at the project Web site at It sounds promising and I hope they will share some video clips. So far the video teaser that they have doesn’t work in my version of Internet Explorer, but does load in Firefox – just be patient since it takes awhile to download before it starts. Today I watched an hour long Alzheimer’s documentary on TV that kept me misty eyed for nearly the entire show. It touched me emotionally and now when someone talks to me about Alzheimer’s, snippets of that documentary will flash back and allow that person to reach me at a deeper and more personal level.

Monday, May 11, 2009

Let's Take a Fresh Look at HD Advocacy

A few things have changed since I last posted over a year ago. Louise Vetter is the new CEO of the Huntington’s Disease Society of America. I’ve relocated to Wilmington, Delaware. And I’ve joined the HDSA Board of Trustees. The Democrats have control of the Senate, House, and Executive branches of government. Yes, a few things have changed, so I’m sure there will be a lot to blog about this year.

Rather than focusing exclusively on universal healthcare, which will be an entertaining discussion later this year, I’d like to turn my attention to advocacy and how our small HD community can take advantage of the growing awareness of Huntington disease and the changes that are taking place at HDSA.

So what are the needs of the HD community? How do we meet those needs? What can the community do for itself if the infrastructure is in place? How can HDSA facilitate the building of the infrastructure? What services does HDSA need to directly provide?

It seems to me that a good place to start this project is to contact and learn from those who are doing advocacy well and then develop an approach to help others to be able to do the same.