The ALS Association is dedicated to improving the quality of life for people living with ALS while leading the fight to find a cure for the disease through research and public policy. It is the only national non-profit that solely supports people living with ALS. The North Carolina Chapter helps more than 500 people living with ALS in North Carolina by supporting all of the ALS clinics throughout the state, loaning medical equipment at no cost to those who need it, and providing financial assistance grants to pay for expenses such as wheelchair ramps, assistive technology and medication. We are here to help families now and will not rest until we find a treatment and a cure!
In 1998, Jenifer Estess, a thirty-five year old New York theater and film producer, was diagnosed with ALS. Her doctor told her to “max out her credit cards and eat junk food.” At that time clinicians and scientists were working separately on varying aspects of the disease. There was no structured effort underway to solve ALS.
Jenifer, her friends and family committed themselves to making a difference in the lives of people diagnosed with ALS and founded Project ALS in 1998 as a non-profit 501(c)3. Together, the founders and the Project ALS Board of Directors developed a new paradigm for ALS research by developing a strategic business model for finding treatments and ultimately a cure for ALS.
As a requirement of funding, scientists were held to a new standard of results oriented accountability. Project ALS funded scientists are expected to work together, share data openly, communicate consistently, meet deadlines and provide progress reports. Their work is evaluated bi-annually by the Project ALS Research Advisory Board, which includes preeminent clinicians and scientists from leading universities and drug companies who work on ALS and related fields. We are the only ALS organization who has an organized RAB that reviews proposals and progress.
Since its inception, Project ALS has advanced ALS research, accelerating the testing of potential drugs, establishing the world’s first and only privately funded stem cell laboratory and developing the first laboratory models of ALS. We have brought together the top stem cell biologists, geneticists, motor neuron experts and ALS neurologists to work on ALS and related diseases—transforming the field.
In 17 years, Project ALS has raised over $75 million, directing between 80-93% annually to research programs.
Dr. David Fajgenbaum, MD, MBA, MSc, is the co-founder and Executive Director of the Castleman Disease Collaborative Network (CDCN) and a Research Assistant Professor of Medicine in the Division of Translational Medicine & Human Genetics at the University of Pennsylvania.
Dr. Fajgenbaum was recently named a member of Forbes Magazine’s 2015 30 Under 30 list for Healthcare and awarded one of the top honors in the rare disease field, 2015 RARE Champion of Hope: Science by Global Genes.