The Rare Disease Family Foundation lends a hand to families of children and young adults with rare diseases. Founded in 2019, our primary goal is to find ways to support families as they go through the rigors of medical treatments with their loved one(s). It’s the simplest gesture of kindness that make these days easier. A gift card for lunch, a discount on a hotel stay, tickets to a movie – anything to relieve the burden of this journey for the day.
My name is Alex Powell and I’ve been there. I was diagnosed with a Desmoid tumor at the age of 17, as I was finishing up my senior year in high school and heading to the University of Dayton on a soccer scholarship.
Although I live close to Cincinnati Children’s Hospital, I’ve spent hours at the hospital, week after week, month after month for MRIs, x-rays and so much more. My mom and I witnessed families from all over the world with their children in the waiting rooms, trying to make the best of their situation. We know what it takes. The long hours, the time away from home, the fast food meals, the doctor appointments – all of it.
Although I am still going through treatments for my diagnosis, my family and I feel that it’s time to pay it forward. It is time to tell my story and help others going through similar situations. Not only will we be collecting personal donations, but our volunteers will be reaching out to local businesses for gift cards, discount coupons, event tickets and service discounts to lend a helping hand to those in need.
Thank you for watching my story and sharing our mission.
Fairfield’s ‘unbreakable’ Alex Powell battles to continue college soccer career
By: Tom Archdeacon August 15, 2019
