It's a Proud Day in Austin, TX

Warning: This is my educational diary and if I actually manage to learn something then my experiences might be both entertaining and educational to others. Since I don’t know where this is going to lead I’ll go ahead and include the warning that this blog might be responsible for wasting your time. So if you continue to consume this blog don’t complain to the Federal government that there wasn’t a warning label.

Before I start on my journey I want to applaud the efforts underway to expand the safety net for those with mental illness in Travis County (Austin, TX area). The support services for the mentally ill in Texas have been abysmal. A collaboration of hospitals, nonprofit groups, governments and the Travis County Healthcare District will be spending more than three million to expand such services in the Austin area. Over the last year I’ve seen a few articles in our local Austin American Statesman that recognized the need for these services and the lack thereof. Apparently those that could do something about it stepped forward. I think there are some lessons here, so I’ll certainly revisit this.

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To begin, I thought a good place to start would be to review the current “State of HD Advocacy”. A casual glance at what’s going on – at least that which is available through the Internet – makes it appear that very little effort is being made by (nor in support of) the HD community to advocate for ourselves. However there are MANY examples that show where there is a serious need.

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“Become an HDSA Advocate!” That is the headline on the HDSA Web site that asks for volunteer advocates. But wait… what’s that next sentence? “Terms and Conditions?” – That seems rather ominous.

After reading the list of “I agree to…’s”, in a nutshell it says that you can represent yourself as an HDSA advocate but ONLY if you limit yourself to what HDSA permits you to say. That’s fair enough – if I were an HDSA staff member. However, knowing that HDSA’s mission is primarily to be a fund-raiser for HD research and my mission will be primarily improving social services for HD families, I don’t believe that being limited to HDSA’s mission is going to work for me.

However, if you’d like to be an HDSA Advocate then you should contact Erin Dorrien at the Huntington’s Disease Society of America. Her phone number is 212.239.3430.

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Oh my. A Google search on “Huntington’s Disease Advocacy” is cluttered with references to my all time favorite Web site – the “Huntington’s Disease Advocacy Center” (http://www.hdac.org). However, that Web site that belongs to me and Marsha - my close friend, confidant, and partner in the field of HD information sharing.

Nice site and it has a, advocacy portal and there ARE a few articles on advocacy, but it’s not exactly what I was looking for . In fact it is exactly that advocacy portal that I expect to see significant improvement on by the end of this year. HDAC has an HD family information sharing focus with an emphasis on self advocacy. We have a VERY active message board with awesome HD family members that contribute an amazing amount of time to helping each other and if you haven’t been there you should stop by and visit.

It seems that each year we are either compelled to try to energize the HD community or we jump on someone else’s bandwagon. But for some reason the momentum of these efforts isn’t sustained – although it certainly seems that there was a significant improvement in HD Awareness in 2006.

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While sifting through the HDAC clutter I found a reference to Jean Miller’s advocacy page and a page that references “We Move” as an advocacy organization. Well, I already know Jean’s site is going to be a good starting point for locating HD specific resources. I visited the WeMove site and wasn’t impressed with their HD support, however – since their stated mission is educating healthcare professionals about movement disorders and clinical management I think their focus is more generic and their program is probably worth a serious look at a later time.

Well, that’s it for today. Tomorrow I think I’ll spend a little more time on Jean’s site and see where that leads me.

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From a recent HDSA Advocacy Alert -

Subject: Advocacy Alert-Stem Cell Research Enhancement Act

The Stem Cell Research Enhancement Act

When the 110th Congressional Session convenes on January 4th one of the first three pieces of legislation introduced will be the Stem Cell Research Enhancement Act. This legislation will expand the number of stem cell lines available for federally funded research while providing stricter oversight and guidelines regarding how the cells are obtained.

Under current law only stem cells derived before August 9, 2001 fall under federally funded guidelines for use in research. None of these lines contain the defective huntingtin gene and will not benefit HD research. The new law will expand the number of stem cell lines available, thereby providing valuable resources to researchers and promoting scientific discovery.

The proposed law also sets strict requirements and guidelines for how the stem cells are collected and ensures that:

1. Embryos used to derive the stem cells were originally created for fertility purposes and are in excess of clinical need;
2. The individuals from which the embryos are created have determined that they will not be implanted and therefore these embryos would be destroyed; and
3. These individuals have provided written consent to derive stem cells from these embryos.

Oversight by the NIH will provide clear guidelines to researchers on using stem cells derived from human embryos and ensures that ethical considerations are met while the search for cures for devastating diseases continues.

HDSA supports federally funded stem cell research that strictly adheres to NIH guidelines or federal law. Please contact your Congressional Representative and Senators TODAY and ask them to support the Stem Cell Research Enhancement Act. For your representatives go to http://www.house.gov/ and http://www.senate.gov/