The Paula Kovarick Segalman Family Scholarship Fund for ALS is a scholarship for students in South Carolina, Virginia, West Virginia, DC, Maryland and Northern Ohio areas whose family has been affected by ALS.
The ALS Association and I AM ALS on Friday submitted a petition to the Food and Drug Administration calling on the agency and Amylyx Pharmaceuticals to act swiftly and with urgency to make AMX0035 available as soon as possible. The petition was signed by more than 50,000 people from across the country who have been affected by ALS.
I was diagnosed with ALS in 2017. Even in the face of a global pandemic, we can’t wait to pursue the treatments and a cure that will end ALS. The people living with and working to end this disease aren’t quitters. They’re fighters to the last breath.
“If I have to be the face of ALS,” Donna Boring said, “it’s not a bad face to have.” Donna was diagnosed with ALS in 2008, at the age of 37. She is one of the heroes in The ALS Association’s new public service announcement (PSA) campaign showing “The Reality of ALS.”
Since 1996, the Sheila Essey Award for ALS Research has been presented by Dick Essey at the American Academy of Neurology Annual Meeting, in memory of his wife Sheila, who battled ALS for 10 years and passed in 2004. This year, the award was presented to Ammar Al-Chalabi, Ph.D., FRCP, DipStat from King’s College London. Find out how Dr. Al-Chalabi’s work is driving progress in ALS research forward.
The urge to support, or be supported, is often accentuated at times of great challenge, or uncertainty. As anyone living with ALS or being an ALS caregiver knows, this disease can bring plenty of both. That’s why The ALS Association provides support groups in every state.
Expanded Access, or “compassionate use” as it is often referred, allows patients with a terminal diagnosis early access to new therapeutics that show promise – even if the patient is not involved in the ongoing clinical trial – or if the medication has not yet been approved by the FDA.
The speech language pathologist, commonly called speech therapist, has an important role in managing the symptoms of ALS. Creating thoughts, words and phrases, no matter if in verbal or written forms, is a complex process involving regions of the brain and a complex network of nerves and muscles throughout the body.
The ALS Association has awarded $4.9 million to help speed the testing of ALS therapies through clinical trials. The Association’s inaugural Trial Capacity Awards will support efforts at 13 established and emerging ALS clinical trial sites to increase the number and diversity of people living with the disease who have the opportunity to participate and improve the efficiency and pace at which these studies are conducted.