After Amylyx’s announced that it intends to file a new drug application for AMX0035, The ALS Association immediately called on the U.S. Food and Drug Administration to approve the treatment for all people with ALS as soon as possible. Connecting ALS talked to the team at Amylyx to learn about the path ahead for access to AMX0035.
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter pens a letter to the Massachusetts community offering thanks for support throughout the trials of 2020 and urges participation in the Chapter's 2021 event season. His letter also details how folks can attend the Walk to Defeat ALS either in person or virtually.
As we continue to do whatever it takes to make ALS a livable disease, we are sharing some of the many resources we have available for the ALS community to help educate, inform and guide you through the ALS journey.
For nonprofit entities like The ALS Association, the filing of its Form 990 tax return is also an important tool to communicate the good stewardship and judicious financial management the Association has demonstrated while working toward its mission of creating a world without ALS.
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter discusses how the efforts of the Chapter compliment May as ALS Awareness Month. This month's letter from our chapter's executive director outline exciting details about coming programs, COVID-19 policy updates, event developments, and advocacy initiatives.
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter offers a comprehensive update about the goings on with local events, care services, and the promise that April brings for the entire Commonwealth.
On the one year anniversary of COVID-19 shutting down the world, Executive Director John Hedstrom of The ALS Association Massachusetts Chapter pens a letter to update the local community on the Chapter's ambitious goals and an exciting new event.
Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.
Once ALS takes away a person’s ability to swallow safely, maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers. And finding delicious family friendly recipes for all to enjoy during the holidays can be difficult.
You may know the old saying “ship shape.” In many ways, that old reference to order and fitness defined Yvette Wilson’s life. She joined the United States Navy immediately after high school and the discipline that experience gave her has shaped her life in many ways. Even after she left the Navy, she lived an orderly life, blessed with good health and a loving family in Albuquerque, New Mexico.
All signs pointed to a wonderful future, until one day she started experiencing a heaviness in her feet.
We recently spoke with Amber Letters - daughter, wife, mother, and part time caregiver of a person living with ALS. Amber and her family live in Pittsburgh and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Amber had to say about her family’s journey with ALS in her own words.
I am the legacy of Oscar Aukschun, who was a wood pattern maker and first generation American and a resident of Cleveland, Ohio who developed weakness of his hands and arms in 1943 around the age of 43 years. He was a hard-working father who provided for his wife and three children.
November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.