Saturday, January 31, 2009


CHOCOLATE: February, 2007. Indestructible won Best Documentary at the Cinequest Film Festival in San Jose. We cheered the standing ovation at the awards ceremony, the family gathered together in celebration, and most of all, Ben’s great improvement because of a new drug, IPLEX. When asked what his next project might be, he answered, “Coming Back.” Deafening applause. Euphoria. A potential future without the ALS curse at our backs.

BURNT: After only two months, IPLEX was withdrawn from the market due to a legal dispute and settlement agreement. Our exhilaration dissolved into disappointment, anger, despair. Despite a multitude of contacts with lawyers, judges, senators, representatives, influential community members, media magnates, the settlement barred the sale, no exceptions. Ben’s moving, brilliant essays were posted on the Indestructible website to no effect. Letters and phone calls to Genentech implored the company to rescind their position but failed. Ben lost his valiant fight against ALS on July 3, 2008.

CHOCOLATE: November, 2008. Based upon Ben’s positive response to IPLEX, TEAM IPLEX, made up of ALS patients and their families, banded together with a common purpose. Get IPLEX. They protested vigorously, sending emails and letters to the media, legislature, Genentech, Tercica, Ipsen and Insmed imploring, demanding and begging them to reach enough of an agreement to release IPLEX to the ALS community. A demonstration in Washington DC scheduled for November 11, 2008 inspired a greater level of activism and determination than ever before. And then an amazing thing happened. On November 8, 2008, all four companies agreed to release IPLEX to the ALS community. Miraculous! We met in Washington DC to celebrate our good fortune. Ben’s spirit was right there with us.

BURNT: February, 2009. Still no IPLEX. The FDA rejected the first of the IND/IRB (Investigational New Drug/Institutional Review Board) requests they received from ALS patients. Their reasons are spurious, based on “unsubstantiated reports” that the drug may be dangerous and perhaps fatal. This is totally false—there are no such reports worldwide. People die from ALS within 2 to 5 years of symptom onset. Death is inevitable. IPLEX has already been tested and found safe for infants and young children. The second reason offered is that “bloggers would want IPLEX for their own use, diminishing or negating the potential for clinical trials.” Except there are no clinical trials scheduled and the only way to get the drug is with an IND/IRB.

Welcome to the CATCH 22 World of ALS. You Can Help.

Call and/or write Congress urging them to write a ‘Morality Law’ that supersedes patents, costs and FDA sanctions in cases of incurable diseases such as ALS.

Write, Call, Email Media and your Senators & Representatives: