ALS United Mid-Atlantic is Advocating for You
During times of confusion and turmoil, ALS United Mid-Atlantic is here to advocate for you. Our team of healthcare professionals is always available to listen and take your information to improve your care and to advance important public policy.
2025 began with news of more challenges for insuring and accessing ALS treatments. Endpoints News reported on January 2, 2025, that Blue Cross Blue Shield providing services to parts of Pennsylvania says it will not cover some therapies granted accelerated approval for at least 18 months after the FDA signs off.
ALS United Mid-Atlantic will continue to follow this information and meet with state and federal policy makers to address the impacts to ALS families. If you’d like to add your story to ALS advocacy, email Tony@alsmidatlantic.org.
Upcoming Events
Help & Hope Symposium
Mark your calendars! Our Help & Hope Symposium is back and better than ever on Thursday, April 10, at the Valley Forge Casino & Resort Stardust Hotel. Hear presentations from esteemed ALS clinicians and researchers. Tickets will be available soon!
Community Highlights
United in ALS Research
ALS United Mid-Atlantic continues to lead important research initiatives to advance new treatments for ALS and to accomplish our goal: to End ALS. Your donations and advocacy help make these research programs possible, including these grants funded in 2024:
ALS-TDI
o Purchase a Biotek Biospa Automated Incubator to run significantly more cell-based assays in iPS cell motor neurons
Penn State Health Hershey Medical Center
o Evaluate the effects of environmental toxins linked to ALS on neuronal homeostasis
Jefferson Weinberg ALS Center
o Routine Evaluation of Neurofilament L Levels in Clinical Care of ALS Patients
o Development of Novel Cell-Based Therapy for ALS/FTD
Temple University
o Enlarge the number of studies to include transcriptome and expression of inflammatory proteins, as well as epigenetic changes to DNA.
Pennsylvania Hospital
o Collect biosamples for use in longitudinal studies
Honor a Loved One with a Named Fund
The Karen Malinoff Fund is one of three new funds that support our ALS mission.
Those who have lost someone to ALS are often eager to share their stories with others. Through ALS United Mid-Atlantic’s Named Funds, friends and family can continue their loved one’s story by creating a legacy of support for the ALS community.
ALS United Mid-Atlantic has more than 70 Named Funds. The most recent Named Funds are:
The Michael J. Kazimer Fund, established by his sister, Peggy, and her husband, Gene, to support research and care services.
The Karen Malinoff Fund, established by her son, Josh, and his family to support the overall mission of ALS United Mid-Atlantic.
The Billy Lake Memorial ALS Research Fund, established by his wife, Patti Lake-Quinn, and her now-husband, Dan Quinn, along with their families to invest in treatments and a cure for ALS.
For more information about the Named Fund Program, contact Donna Cleary, Director of Development at 215-664-4133 or Donna@alsmidatlantic.org.
The Michael Kazimer Fund supports ALS research and care.
The Billy Lake Memorial Research Fund supports ALS research programs.
Volunteer of the Month: Marie Mullins-Bishop
For Marie Mullins-Bishop, the letters ALS represent Always Love Someone. That someone is her husband, David.
“Although I am not the one diagnosed with the disease, daily it still impacts both our lives,” said Marie. “I will not let ALS steal the love we have for each other or the memories we make each day.”
Each month, Marie provides comfort and encouragement to other ALS caregivers. She has participated in many ALS events, from Help and Hope to speaking at the 2024 Annual Celebration. ALS United Mid-Atlantic is proud to recognize her as our Volunteer of the Month.