PHOTO: Heidi Edwards, center, president and founder of Sisters鈥 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 family鈥檚 honor, didn鈥檛 foresee such a mission in her future when she enrolled at Alvernia 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 Alvernia student, she wouldn鈥檛 be the person, or professional, that she is today. After an internship with CNA Insurance in the Human Resources department, her trajectory shifted.
鈥淚 don鈥檛 know what I鈥檇 be doing today without that internship,鈥 Edwards said. 鈥淚 fell in love with the work.鈥
That led to a position with the company upon graduation, and later, a master鈥檚 degree in human resources management and labor relations.
It was in 2002 that her life took another turn. Heidi鈥檚 Aunt Ruth became ill. Exhibiting behavioral changes, it took two years for doctors at the University of Pennsylvania to diagnose Ruth with Pick鈥檚 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, Heidi鈥檚 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 mother鈥檚 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 family鈥檚 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 what鈥檚 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 Alvernia 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 Alvernia's core value of service, Heidi started Sisters鈥 Hope Foundation to raise awareness and to educate people about ALSP, 鈥渢he most devastating disease that people have never heard of.鈥 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 foundation鈥檚 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.
