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angieweav

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1 reviews

Review for FamilieSCN2A Foundation, East Longmeadow, MA, USA

Rating: 5 stars  

My daughter battled relentless seizures starting in 2008. My husband and I doggedly pursed a diagnosis, visiting specialist after specialist at many different hospitals never finding an answer. At age 9, after whole genome sequencing, my daughter received an Scn2a diagnosis. We were told she was the only one. We were given no information on Scn2a, no treatment options, no hope for the future. It was absolutely devastating. A year later, the now Executive Director and Co Founder saw that I shared my daughter had Scn2a in a rare epilepsy group. She reached out and shared that she was forming the Scn2a Foundation. Since the start of the foundation I have been an active volunteer, guest speaker, fundraiser, and advocate. My family has received incredible support from this foundation and community. To see how the Scn2a Foundation has grown since it began is absolutely phenomenal. The Scn2a Foundation’s research focus on finding treatments and a cure for Scn2a is a powerful thing for families in the epilepsy community.

Role:  Volunteer