In the heart of Glenview, Illinois, a remarkable tradition has flourished over the past 25 years. Not only have the volunteers behind this grassroots campaign raised valuable funds for ALS care and research, but what they’ve learned can help you …
Faces of ALS: Living life to the fullest
Jessica Morris always knew there was a possibility that she might carry the SOD1-ALS gene and eventually get ALS, but she never dwelled on it, keeping busy with her three children – Aidan, Christopher and Mia. In 2020, she began …
FDA Advisory Committee Recommends Accelerated Approval of tofersen
Watch our oral testimony at the FDA Advisory Committee meeting on March 22, 2023. We are grateful to the FDA Advisory Committee for reviewing the evidence, listening to the ALS community and voting to recommend accelerated approval of tofersen for …
Faces of ALS: Devoted to Care
Jayanthy Thiagarajah was a fiercely independent woman and a devoted grandmother. In early 2021, having recently lost her husband, Jayanthy was still in mourning when she took a couple of nasty falls that required medical attention. She lived in Boston, …
Comments to the FDA Advisory Committee in Support of Tofersen Approval
RE: FDA-2022-N-0691 Dear FDA Advisory Committee: We write to express our strong support for the approval of tofersen under the FDA’s Accelerated Approval Program. Our organization’s long history of scientific research into SOD1-ALS and our depth of experience supporting people …
Faces of ALS: A mother’s love
Chaunelle Caver-Perkins and her family will be among the guests at the 35th annual Hope Through Caring Gala this Saturday, Feb. 18. You can support the ALS research, education and clinical care described below by participating in our silent auction. …
Faces of ALS: Redefining advocacy for a new generation
Please join us at the Hope Through Caring Gala on Saturday, Feb. 18, where Brian and Sandra will be our guests of honor alongside fellow awardee First Bank Chicago and people living with ALS like Ken Avick. By attending the Hope Through Caring Gala, you …
Faces of ALS: Hope Through Painting
Please join us at the Hope Through Caring Gala on Saturday, Feb. 18, where Ken and his wife Ann, award honorees Brian Wallach & Sandra Abrevaya and First Bank Chicago, and people living with ALS will be our guests of …
Faces of ALS: From caregiver to advocate
Tyler Gaetano’s mother Vera, a Navy veteran, worked in the research department at the VA Hospital in West Haven, CT. Because she had been experiencing slurring of her speech, she decided to seek medical advice. Due to her history of …
Faces of ALS: Lending a helping hand
Navy veteran Jim Schlader, his wife Sue, and their neighbor Larry Nieman have lived next door to each other for six years. During that time, they have developed a friendship that has become more like family. “Jim and Sue have …
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