The U.S. District Court for the District of Columbia struck down a 2021 federal rule on Monday that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs. The ALS Association is part of a coalition of patient advocacy organizations supporting the effort to end “copay accumulator” policies.
Mark Kandel began experiencing indicator symptoms of ALS in 2011; falling, difficulty walking, loss of balance, spasticity in his right leg, and foot drop. In October of 2014, at age 59, he received his ALS Diagnosis at Mayo Clinic in Rochester, MN.
Mark is now "66 years young" and attends the Froedtert Clinic working with Dr. Dominic Fee. Despite the abilities he’s lost, Mark’s focus is on the present and what he is still able to do to "keep fighting."
After nearly 11 years of dedicated service, our executive director, Mary Wilson Wheelock, has announced her departure from the organization. Her last day will be Wednesday, December 1.
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.
The ALS Association is partnering with, and will be directly investing in, the ALS Investment Fund II to raise $100 million to accelerate investment in ALS research and development. This second venture fund with offices in Boston and Amsterdam, succeeds a fund that started in The Netherlands and raised $25 million in two-and-a-half years to invest in companies with ALS initiatives.
Tom Mountin’s ALS diagnosis came as quite a shock in August 2016. “Before that, I was a tax attorney and thinking about retirement and all of a sudden, oh, I guess we're going to accelerate this retirement,” he said.
The ALS Association, our partner ALS organizations, and the wider ALS community are all hopeful that several therapies currently in Phase 3 clinical trials will prove to be successful in slowing, halting, or reversing ALS. One of the therapies now in Phase 3 trials, NurOwn, has been the subject of considerable discussion on social media. Some of what is being stated on social media is unfortunately not accurate, and risks misleading people with ALS and their caregivers.
Five years ago, I joined millions of people around the world and took the ALS Ice Bucket Challenge. The Challenge took America by storm and fueled the biggest social media movement in history. At least 17 million people uploaded videos to Facebook to raise awareness and donate to ALS research, and over $115 million was raised for The ALS Association.