Since Mark’s diagnosis in 2000, he has been committed to the fight against ALS on many levels. Over the past 21 years, he has advocated locally at the state level and nationally on Capitol Hill. He’s volunteered at innumerous events with The ALS Association Mid-America Chapter and served on the Chapter’s board and Services Committee. All who know him say his ALS diagnosis does not define him, instead it motivates him to do more and to give hope to others.
We talked with Dr. Ahmad Al Khleifat, recent winner of the distinguished ENCALS Young Investigator Award and postdoctoral fellow from King’s College London, to learn more about his research focused on disease gene identification through next generation sequencing, coupled with advanced data analysis to deliver diagnostic tools for complex disease genetics.
It’s going to take all of us working together to make ALS a livable disease and ultimately find a cure. And it will take people like YOU. Whether you have a personal connection to ALS or just want to help make a difference for families impacted by the disease, becoming an advocate is easy.
I’m hopeful because when my father left us, he left a piece of himself with me, and I’ll do everything I can to raise as much money and awareness as possible so that those three letters - A L S - are no longer considered a death sentence.
Today, in Major League ballparks across the country, fans will take part in the celebration of the second annual Lou Gehrig Day, an event to help spread awareness and raise funds for people living with ALS and their families. And no baseball fan is more excited than Larry Falivena.
Earlier this year Scott Kauffman, a business executive and long-time leader in the fight against ALS, began his tenure as chairman of The ALS Association Board of Trustees. We recently caught up with Scott on Connecting ALS, where he talked about his connection to the disease, raising awareness and his vision for creating a world without ALS.
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.