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. She has worked in Human Resources and Talent Acquisition for over twenty years. Her passion to help others affected by ALSP, desire to gain knowledge of the disease and become an expert in this field began over ten years ago.
Heidi’s passion is raising awareness and advocating for those affected by ALSP. Her journey with the disease started twenty years ago when her aunt was diagnosed, followed by her mother, uncle, two sisters, and most recently cousin and nephew.
In 2020, she knew she needed to continue pushing forward with Sisters’ Hope Foundation because her sisters were both showing signs of disease progression. As the only sister without the genetic mutation of the CSF1R gene, she needed to be their voice. Her mission to save future generations started with a Facebook group for her sisters and grew into a global foundation which supports patients, families, and caregivers in all corners of the world and in multiple languages.
Heidi was a caregiver for her twin sister who passed away from ALSP in 2021. Heidi’s husband is also battling a rare neuro-degenerative disease, Posterior Cortical Atrophy and Lewy Body Dementia whom she also cares for at home.
Note: Heather lost her battle with ALSP during a HSCT (Bone Marrow Transplant) on August 28, 2020, at the age of 45. Holly lost her battle with ALSP on July 20, 2021, at the age of 44.