Because of the relentless effects of ALS, a diverse group of ALS voices — patients, families, organizations and the community — came together to speak about their experiences with ALS and to urge the FDA to work with them to overcome some of the obstacles faced in ALS research, clinical trials and standards of care.
“Some may look at recent failures and be discouraged,” wrote Richard Bedlack of the Duke ALS Clinic in Durham, North Carolina, in an e-mail to Alzforum. Thanks to advances in genetics and biomarkers, and a list of potential target pathways, “I think this is a time of unprecedented hope and excitement in ALS research”
ST. LOUIS, Missouri, January 12, 2013 — The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) presented their annual Winged Warrior award to Julie Tristan, anchor-reporter for KSDK’s Show Me St. Louis.
The presentation was made at the RASCALS’ recent Trivia Night, for which Julie has been the Master of Ceremonies since the inaugural event in [...]
While some progress has been made in the treatment of ALS, combination therapies with drugs that target other pathways, alongside stem cell technology, are sorely needed
There are three classifications of ALS; sporadic, familial, and Guamanian. However there is a rare form called “juvemile ALS.”
“The whole process with the FDA is broken. And it is all about the process, it’s all about the FDA, it’s all about the administration, instead of being about the people,” she said.
The U.S. Food and Drug Administration (FDA) approved the second treatment after a review concluded that the patients showed no adverse effects from their first implantation surgeries.
With regard to the development of an efficacious treatment for ALS, we are still in its infancy. There is much more to be done—and much more quickly than we’ve seen.
“On one end of the spectrum you have people who are doing, essentially, badly designed uncontrolled human medical experiments for profit. And then at the other end of the spectrum you just have thieves who are preying on the sick and their families.”