Dr. Bridget Stegman was diagnosed with bulbar onset ALS in February 2022. She and her family have been embraced by their community, who have showered them with love and hope as they rally together to spread awareness of this disease.
In order to make ALS a livable disease and ultimately find a cure, it’s going to take people living with ALS, their caregivers, family members and loved ones across the country coming together to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease. In the past 12 months, ALS advocates have seen a number of public policy wins.
In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.
I have been very fortunate and extremely unlucky in my life. I have bulbar-onset ALS. Of course, living with this “new normal” is challenging. But my previous experience with grief has informed my attitude now as well, and I try to live each day as best I can, in the most positive way possible.
May is ALS Awareness Month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches. To kick off the month of May, we’re highlighting eight easy ways you can help raise awareness this month and beyond.
Mike will never forget receiving a phone call telling him that his best friend, Matt, had been diagnosed with ALS. The first event Mike attended for The ALS Association was a golf event in Janesville with Matt. That one event has now become years of walks and third-party events supporting The ALS Association Wisconsin Chapter.
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.
We recently spoke with Jeff Elbert, volunteer and board member for The ALS Association Florida Chapter, to learn more about his personal connection to ALS and his fight to bring more critical care and support to people living with ALS and their families.
For more than ten years, Donna has worked with The ALS Association Greater Philadelphia Chapter as Director of Development. She has also been a constant advocate, supporting the chapter’s ALS families through fundraising initiatives, and a caring, compassionate ally throughout their ALS journey. Hayley and Felicia joined Donna in her mission to help people impacted by ALS when they were young girls.
We recently spoke with Jo-Ann Clynch, volunteer and board member for The ALS Association Florida Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.
Occupational therapists are key members of the clinic team for individuals living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken. Occupational therapists help to provide expertise and creativity to help patients better manage daily activities for as long as possible.
We recently caught up with Lindsay Litterini, volunteer and board member for The ALS Association Western Pennsylvania Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.
The ALS Association is accepting applications for The Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
The American Academy of Neurology, The ALS Association and the American Brain Foundation have awarded the 2022 Sheila Essey Award to Matthew Kiernan of the Brain and Mind Centre at the University of Sydney in Australia and a member of the American Academy of Neurology. We recently caught up with Dr. Kiernan on Connecting ALS to discuss advances in ALS research since he first entered the field and how the Essey Award will help move his research forward.
Volunteering for The ALS Association is the longest I’ve ever done anything in my life. There’s always more to be done, but creating an environment, virtual or in-person, where people impacted by ALS feel welcome, empowered, and heard is so important.
On a recent Connecting ALS podcast episode, Maintaining Mobility, we sat down with Shannon Terrell, Doctor of Physical Therapy at the Kaiser ALS clinic in Colorado to learn more about her experience treating people living with ALS and get her thoughts about how she helps her patients manage their mobility.