Heidi Edwards | President & Founder
Sisters’ Hope Foundation

Heidi Edwards is the President and Founder of Sisters’ Hope Foundation. She holds a Bachelor of Arts in psychology from Alvernia University and a Master of Arts in Human Resource Management and Labor Relations from St. Francis University. Heidi works with multiple industry partners, has been named to the FDA Total Product Lifestyle Advisory Council, serves as an Advisory Board member for Jura Health, led an ALSP FDA Patient Listening Session and presents to clinicians, investors and biotechnology companies around the globe. Heidi’s passion is raising awareness and advocating for those affected by CSF1R - ALSP. Her journey with the disease started over twenty years ago when her aunt was diagnosed, followed by her mother, uncle and two sisters. In 2020, she knew she needed to continue pushing forward with her advocacy work and form a foundation to support, raise awareness and Cure ALSP. Sisters’ Hope Foundation was formed because her sisters were both showing signs of disease progression and with no cure they would not be able to survive this devastating, rapidly progressive neurodegenerative disease. As the only sister without the genetic mutation of the CSF1R gene her choice to pave the way for future generations was a simple decision. Heidi’s older sister, Heather, passed away in 2020 at the age of 45 and her twin sister, Holly, passed away from ALSP in July 2021 at the young age of 44. Her mission to move forward despite the devastating loss of her family members will continue and the families legacy will save her cousin, nephew and her other family members. Most importantly, the foundation will educate and empower those affected by this rare disease not just in her family but in other families around the world. A mission to save her own family has now grown into a global foundation supporting CSF1R - ALSP patients and families and includes all CSF1R related disorders, AARS1, AARS2, and those yet to discover the mutation which has caused their ALSP diagnosis.