What fundraising for debra of America at the NYC 1/2 Marathon means to me
As a pediatric pain, symptom management and palliative care provider in NYC, I cared for many young people affected by Epidermolysis Bullosa (EB) - The Worst Disease You've Never Heard Of. I even had the honor of speaking at the debra of America 2012 Patient Care Conference. What is debra? debra of America is the only national non-profit dedicated to funding research and providing services and programs for those with EB.
Now that I am a Hospice Medical Director in rural Vermont and New Hampshire, I want to stay connected and contribute to debra and its mission. Every day, every run I remember the children for whom I cared. Tragically, some died in infancy. Others lived a life filled with too frequent pain, itch, anxiety and doctor's appointments or hospitalizations. Through it all I saw devoted, loving parents, healthcare professionals and always the faces and personalities of youngsters living life as well as possible.
There are many different ways your donation will help:
-$25 will send a weeks' worth of necessary wound care supplies to an EB Family
-$50 sends a care package to a child who has just been diagnosed with EB
-$100 allows our EB Nurse Educator to help a family in need
Please donate. Any amount is appreciated!
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