BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
In November, I will be running the NYC Marathon in honor of my dear friend Emily’s daughter, Elodie, and all families living with Epidermolysis Bullosa (EB).
At birth, Elodie was diagnosed EB, a rare genetic skin condition caused by a lack of collagen 7, one of the proteins that holds the layers of the skin together. As a result, her skin is incredibly fragile and blisters or breaks with little trauma. There is no treatment or cure for EB today and those afflicted often do not make it past their 30th birthdays. Management of the disease requires extensive bandaging to prevent and heal wounds. However, hope is on the horizon! Thanks to the work of the EB Research Partnership (EBRP), the largest foundation in the world focused on finding a cure for this disease, there are now more clinical trials happening right now than ever before.
EB can be devastating, but in spite of her condition Elodie is a beautiful, happy baby that loves boat rides, the pool and trying to get her hands on her mama’s iPhone:) She is blessed to have two amazing parents that are constantly educating themselves, advocating for her and bravely facing life with EB each and every day. As a parent myself who often feels like my plate is full, I am in awe of Emily and Dave and the unthinkable challenges they face on a daily basis. EBRP has been a fantastic source of support for them and their whole family, and by donating to our cause today you can help them continue their fight for a cure for Elodie.
Team Elodie had an impressive showing in March at the NY Half Marathon and I want to continue the momentum in November. With your help, EBRP will fund clinical trials of treatments and potential cures that will make a difference for Elodie and others living with EB. These are not shots in the dark - the science is there and we need to make sure the trials stay funded.
To learn more about EB and the work of EBRP, please visit: https://ebresearch.org/what-is-eb/