The Dominant Inherited ALS (DIALS) Network research study is recruiting participants who do not have any neurological symptoms, but who have a first-degree relative with ALS caused by a mutation in the C9orf72 or SOD1 gene. The purpose of the research study is to study a population at risk for developing ALS.
The Montreal Neurological Institute and Hospital’s Clinical Research Unit (CRU), will hold its 2nd Annual National Clinical Trial Training Program on June 15 & 16, 2017 at the Montreal Neurological Institute and Hospital.
The Northeast ALS Consortium (NEALS) was pleased to participate in The ALS Association’s 2017 National ALS Advocacy Conference, held in Washington, DC from May 14 - 16. The event brought together people with ALS, representatives of nearly every major ALS organization, and advocates from across the country, providing a forum to share ALS stories, hear about the latest research opportunities, and urge Congress to make a difference in the fight against ALS.
This year, an overwhelming number of NEALS members were invited to participate in the meeting; the membership gave multiple plenary talks, served as session chairs, participated in platform presentations, and presented abstract posters over the week-long program.
More information about Radicava (Edaravone) and when it will be available in the US.
Today, the FDA approved the drug Edaravone for the treatment of ALS. NEALS is thrilled to now have another medication for our patients. For more information on how to access Edaravone, contact the staff and physicians at your ALS Clinic.
Nominations and self-nominations are now being accepted for the 2017 Clinical Research Learning Institute (CRLI)! Patients, caregivers and patient-caregiver pairs are encouraged to apply.
NEALS Research Ambassadors, Stephen Winthrop and Pete Frates, were recently interviewed by WCVB, the Boston ABC affiliate, about their commitment to clinical trials and the fight against ALS.
Madeline Kennedy describes the benefits of a multidisciplinary care approach for people living with ALS.
Please join us on March 23rd for a webinar discussion on cannabinoid use in ALS led by Drs. Mark Ware and Angela Genge from the Montreal Neurological Institute and Hospital. Dr. Ware will discuss the mechanism of action of cannabinoids, while Dr. Genge will discuss their use in symptom management, and possible effect on disease course.
