There have been a number of publications describing the important role of genetic counseling in amyotrophic lateral sclerosis (ALS). While such attempts at guiding who should undergo genetic testing are welcome, they are put forth in a vacuum because there are no data on where ALS neurologists stand in terms of genetic testing and counseling for the disease, and in terms of what is considered to be familial and sporadic ALS.
Trial News & Events
Research Ambassador, Mary Luper will share her experiences with ALS advocacy on November 14th at 3:00 PM EST. Register here.
NEALS co-chair Terry Heiman-Patterson will provide the keynote presentation at the 6th annual symposium on Nov. 7th in Chicago.
Join Dr. Merit Cudkowicz, Mass General Hospital, for a webinar on October 26th at 1:00 PM EDT to learn more aobut current and upcoming ALS clinical trials. Register here.
The 6th Annual ALS Clinical Research Learning Institute (CRLI), sponsored by The ALS Association, was held October 7 – 8, 2016 in Clearwater Beach, Florida. There were 37 people in attendance, including 11 patient-caregiver pairs, 4 returning research ambassadors and 7 faculty members.
Defining SOD1 ALS natural history to guide therapeutic clinical trial design. Read research paper here.
MGH is seeking 200 PALS and healthy volunteers to participate in a stool collection research study.
Two NEALS Research Ambassadors - Richard Isaacs and Ted Harada – were among the four courageous people honored at the Annual Heroes Luncheon! Read more here.…
Please join us in congratulating James Berry from Mass General and Peggy Allred from Cedars-Sinai.