Steve Heronemus

ALSA Freezes Patients Out

The national ALS Association is failing to support the ALS community that so lavishly supported it. It is awash in cash from last summer’s Ice Bucket Challenge, a $120 million windfall it never expected. The IBC was a grassroots effort it did not need to plan, organize or run, yet people with ALS (pALS), their families, friends and an empathetic public entrusted this money to the ALSA. Our expectation was that we would have a voice in how that money would be spent and that a flood of support for promising therapies would ensue.

We were wrong. 6 months later barely a trickle of research money has come out of the ALSA despite the most comprehensive portfolio of existing research efforts ever seen in this disease. They have hired a person to act as a grant application czar and they have created a lovely graphic of their 4-prong attack plan. What doesn’t get included in this plan is any attempt to support development of drugs already in the pipeline.

The reason for this is two-fold. First, the ALSA does not believe a cure is worth pursuing at this time. As Lucie Bruijn, Senior Vice President of Research and Development for the ALS Association wrote:

“I think it’s unrealistic to think that we’re going to cure the disease at this point”

Facebook 5/20/10

So the person in charge of directing research efforts is closed to the possibility of a near-term breakthrough.

Second, the ALSA wants control and prestige to accrue to themselves. I have experienced this personally when I volunteered to help with an awareness effort they organized in Chicago. Everything was all set for me to contribute until they found out I also support another ALS organization, at which point they dropped me. In the recent grassroots effort to push a new drug to conditional FDA approval code-named GM6 from Genervon Biopharmaceuticals, the ALSA has unhelpfully suggested Genervon apply for a grant to repeat the clinical trial stage just completed, this time using ALSA procedures.

Additionally, the ALSA seems to have forgotten that its constituency, the people who pay their salaries and fund their programs, are thinking adults with their own priorities. Those priorities mainly involve staying alive for their loved ones. PALS do not have a voice to steer contributions toward efforts they care about and recent ALSA public communications regarding their position on support for Genervon’s application to the FDA for conditional approval of GM6 have been wrong and misleading. First they said Genervon only tested GM6 on one person when in reality there were two trials, one with 12 people and the other with one person. Then they said the trial was only two weeks when in fact it was 12. And they called the trial a feasibility study not designed to measure clinical results when public record of the trial design clearly stated the opposite. Over 100,000 ALSA constituents have signed a petition to the FDA supporting the conditional approval of GM6 yet the ALSA is publishing misinformation and refusing to support their constituents’ requests. On top of everything else, at this vital time when the public need and scrutiny is at its highest, they choose to hold a national leadership conference in Florida. The main topic of the conference is how to raise money. Apparently the $120 million we raised for them doesn’t buy our attention.