To help provide more information about our research program, our spending decisions, our approach to certain experimental therapies, and other matters, we have put together the below Frequently Asked Questions.
ALS Association leaders and people living with ALS urged Maryland senators to advance legislation that would prohibit companies that offer life and disability insurance from using the results of genetic testing to deny coverage or influence pricing decisions. John Knowles, a caregiver for his wife, Teri, testified about the impact familial ALS has had on his family. Teri’s twin sister died in 2013, and another sister died in 2020 after living with ALS. John talked about the need for genetic testing for family members and the fear that the results could be used against them.
A committee convened by the Institute for Clinical and Economic Review voted overwhelmingly on August 19 that oral edaravone and AMX0035 provide meaningful clinical benefit to people with ALS and have a positive impact on quality of life, but that neither drug provides sufficient value to justify the presumed cost to insurers.
One of the questions that people living with ALS often ask is – what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry (Registry) – in the newly launched National ALS Biorepository (Biorepository).
As part of the global ALS research community, you play an integral role in helping us achieve this goal, and we are here to support you. Through our diverse portfolio of grants and awards, we fund cutting-edge research across the translational pipeline from basic science to early-phase clinical trials in addition to research in other important areas, such as prevention, assistive technology and quality of care.
Beckie Cooper, the first executive director to date of The ALS Association Keith Worthington Chapter, retired at the end of 2013, after 26 years of devoted service.
There are a number of different ways people living with ALS can participate in research, from qualitative studies providing deeper insight into the experience of living with ALS to observational research documenting the progression of the disease to clinical trials testing the safety and effectiveness of new treatments. There are also research opportunities for family members of people living with ALS as well as current and past caregivers.
ORLANDO -- On Saturday, October 8th, more than 100 families living with ALS will have the opportunity to connect with one another for a day of impactful learning and discussions on topics related to the disease. The Symposium will take place at the Rosen Shingle Creek Hotel and Conference Center in Orlando starting at 8 a.m