26.2 miles for the EB Research Partnership
Two of the strongest people I have ever met are my step-sisters, Haylee and Abbie Labarbera. Both were born with a genetic condition, Epidermolysis Bullosa, a disease that causes extremely fragile skin, painful blisters, and lasting internal and external wounds. Abbie was a shining albeit sarcastic light and never failed to bring a laugh until she passed away in May of 2020. Haylee continues to brave each day with a smile on her face, and bring awareness to the EB community.
After seeing the pain this condition can cause, I decided to run the Philadelphia marathon to raise money for the EB Research Partnership. I will be running 26.2 miles on November 21st, and over 500 miles in the months leading up to this race in preparation. Over this entire experience, I know that any pain I experience is only a fraction of what Abbie, Haylee, and every other person with EB faces on a daily basis.
There are currently no treatments or cures for this disease, but the work of the EB research fund is actively working to change that. By investing in promising studies, they are working to ensure that no other child has to endure this pain day in and day out. I hope that you please consider donating to this cause since each dollar brings us one step closer to finding a cure for Epidermolysis Bullosa.
For more information about EB and the EB Research Partnership, please review the following video and website.
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guidestar.org/profile/27-2417202