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.
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.
ALS doesn’t stop and neither do we. The reality is, people living with ALS can’t wait for treatments and a cure, and just as importantly, the tireless researchers working together around the world can’t wait to make the next breakthrough.
Meet Jinsy Andrews, M.D., MSc, FAAN, Director of Neuromuscular Clinical Trials at Columbia University, and member of The ALS Association Board of Trustees. Dr. Andrews is a clinical neurologist, neuromuscular specialist, and an ALS specialist.
Navigating the world of health care, insurance, and especially Medicare, can be very complicated and overwhelming. Making the right decisions when it comes to healthcare and understanding all of your options is critical for everyone, but even more so for people living with ALS.
Before his diagnosis, John Russo had two fears: the first was getting attacked by a shark while fishing at night, and the second was being diagnosed with ALS. He managed to avoid the sharks, but not ALS. After taking a few weeks to process what the rest of his life would look like, he realized he needed to face down his biggest fear and keep going. He found a new purpose: making life better for people living with ALS across the country, as well as deepening research efforts to learn more about the disease.
We can’t wait until this pandemic is over to accelerate our pursuit for improved treatments and a cure. The fact that the whole world is affected by something we cannot control is not an excuse to wait.