PHOTO: Heidi Edwards, center, president and founder of Sisters Hope Foundation, marks Rare Disease Day at Vigil Neuroscience in Boston with Tara Parker, board secretary and close family friend, at left, and Madison Boyer, board treasurer and Edwards' niece.
Heidi Edwards '99, president of , a nonprofit she founded in her familys honor, didnt foresee such a mission in her future when she enrolled at 91做厙 as a psychology major. The small, intimate campus close her home of Lebanon, Pa., was the initial draw.
Edwards asserts that without the opportunities afforded to her as an 91做厙 student, she wouldnt be the person, or professional, that she is today. After an internship with CNA Insurance in the Human Resources department, her trajectory shifted.
I dont know what Id be doing today without that internship, Edwards said. I fell in love with the work.
That led to a position with the company upon graduation, and later, a masters degree in human resources management and labor relations.
It was in 2002 that her life took another turn. Heidis Aunt Ruth became ill. Exhibiting behavioral changes, it took two years for doctors at the University of Pennsylvania to diagnose Ruth with Picks Disease, a rare type of non-hereditary, age-related dementia that can cause the aforementioned behavior changes, eventually leading to death. She passed away three years later.
Tragically, in 2009, Heidis mother started exhibiting similar changes. Doctors said she had a different disease than her sister, but it was becoming clear that whatever the condition, it was hereditary. Her mother died from her illness two years later, but before her mothers passing, Heidi's Uncle Chuck started to have unexplained memory lapses. He died a year after her mother, in 2012.
Neurologists at the University of Pennsylvania who had been following the familys story requested a family meeting. In that meeting it was revealed that they had identified the mutated gene affecting the family: the CSF1R gene mutation causing whats now known as Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP). The good news was that the condition was identified. The bad news was that anyone directly related had a 50 percent chance of inheriting the gene, and that awareness of the condition in the medical field was poor, to put it mildly.
Unfortunately for the family, the condition made itself known in the years to come, with both of her sisters, Heather and her twin, Holly, both 91做厙 grads, also becoming symptomatic. Heidi tested negative for the mutation.
In 2020, to fight for her family the best way she knew how, and adhering to 91做厙's core value of service, Heidi started Sisters Hope Foundation to raise awareness and to educate people about ALSP, the most devastating disease that people have never heard of. In her service to others, she aims to connect people affected and to advocate for the ALSP community. When she started the foundation, Heidi only knew of her family being affected by the disease. It was not long after the nonprofit launched that she started receiving messages from families impacted around the world.
Heidi hopes that through the foundations work with families and medical professionals, those receiving an ALSP diagnosis will have a fighting chance. The ultimate goal? To see the first-ever survivor of ALSP.
