ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, May 14, 2009

Here Are Random Tidbits From The National ALS Advocacy Conference and Advocacy Day on Capitol Hill

Normally I try to confine this blog to items in the news, but today seemed like a good day to share some of the information from the ALS advocacy conference for those who could not attend. I did not arrive at the conference until the middle of the Monday morning session, so the information here is not by any means comprehensive. Many hope that this year the Powerpoint files from presenations will be available both for those who could not be there and for those who were there and want to review the materials.

If anyone has additions or corrections, please contact me. I'm obviously not a journalist or a scientist or even a good note-taker, but here goes...

Highlights --

Our ALS Veterans. Yes, they make things happen.

Bo from the Paralyzed Veterans of America was simply impressive. It's good to know our ALS veterans have such a resource, and we could all use a good dose of "PVA attitude." On Capitol Hill when we mentioned PVA to health legislative assistants, that always lit up a positive response. The sheer number of PVA cases handled for PALS could provide some interesting data.

ALS Registry. The $5 million request to continue the pilots was an easy sell for our group on Capitol Hill. The common sense of counting noses and tracking environmental factors has finally hit home. There was confirmation that a web portal will be provided for PALS to self-report to the registry. That was reassuring to help insure that PALS won't be lost in the gaps among the four silos of data that are being coordinated to mine for PALS data.

NINDS Research. It appeared to me that there was a substitute speaker for Dr. Landis of NINDS. That was a disappointment since she is an excellent speaker who has an interesting feel for the ALS cause.

ALSTDI, etc. The presence of ALS stakeholders from other organizations was a positive sign that we're growing to realize that we need to exert an efficient offense and defense against ALS (and not each other).

Research in general. I'm not a scientist, so when I hear so much about growth factors, it's hard for me to discern what is different from these projects than the ones I heard about 12 years ago. The scientists who spoke were enthusiastic and obviously smart and concerned. They were all appreciative of the opportunities that ALSA provided with research funds. Stem cell session had PALS taking notes.

Answers to questions. There were mixed messages, and the problem may have been my brain. Audience q and a never had enough time. There's probably a message there.

Several attendee questions had a common theme -- if you had more resources could you develop a treatment or cure more quickly? Sometimes the answers were along the lines of nine women not being able to have a baby in one month. Other times the answers were that more funding was needed. My sense is that when they still have so many mysteries in the disease that nobody wants to commit a deliverable even if there were unlimited resources.

Nobody on the podium was able to deal with the ticking clock that PALS have as questions were addressed. The speed of science and the speed of ALS are two different things. The speed of registry development and the speed of ALS are clearly two different things. A PALS's question about "what would it take to get the Cadillac registry (not the VW) now" never really got an answer. There is a big meeting of registry pilot investigators in June in Atlanta, and after that we can expect some direction on what comes next.

When the question was asked about suspected ALS clusters, the registry gentleman from the CDC did not seem to be aware of the cited situation near the Kennedy Space Center.

ALSA has the difficult job of keeping advocates "on message;" however, I don't believe that the question regarding the ALS dollars within the NINDS budget was ever answered.

The question regarding the report in the Philadelphia press that ALSA wanted the Veterans ALS Registry reopened was answered. That report was not accurate. ALSA is focused on the national ALS registry now.

There were 499 registered for the conference and it was a motivated bunch of advocates!

Here is the save-the-date information for future conferences:
May 9-11, 2010
May 8-10, 2011
May 13-15, 2012

Now we need to make some progress so that PALS who were there this year can keep going back. Perhaps our goal should be to be able to cancel the 2012 conference because of ALS having been cured.

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