Sabrina Grays

Phoenix, Arizona
Sabrina Grays

I am Sabrina Grays, and I was diagnosed with CMT4C when I was 15, over ten years ago. I grew up always knowing something was wrong, but doctors wouldn’t listen to me or my parents, and if they ever did listen, they never really knew what to do. Finally, our family received a grant to take genetic testing, and discovered that I had CMT4C… along with two more of my sisters. This was pretty disruptive to our family dynamic as a whole, receiving a mass diagnosis like that, but I am so thankful for the medical teams who believed us and wanted to help. They changed everything for the better.

I still struggle with a lot of pain, particularly nerve pain. It's quite unmanageable for me, and I've taken a permanent leave of absence from my job. I am very fortunate to receive disability assistance, and work very hard volunteering in fundraising and advocacy groups to stay busy. I'm so passionate about creating a world where there are options for those struggling with CMT4C to receive a treatment that increases their quality of life, not just for myself but for my two younger sisters as well.

Now I live in Phoenix, AZ with my incredible husband Dana, my sister Amanda, and her service dog Opie. My life looks very different now than what I expected, but with the love of my family and friends, I’m able to navigate and cope with each twist and turn this disease takes me on. I’m so hopeful that one day, we will be able to fund the cure for this illness.