Welcome to My Personal Fundraising Page
I am honored to be running the NYC Half Marathon on March 18th, 2018 for debra. This amazing organization is truly a blessing to families who have a loved one with EB. This run is very important to me. My cousin Joseph, who is no longer with us, was born with EB. He was an amazing child. He lived to be 16 and every day of his life was difficult and at times unbearable pain. His parents, Joe and Janine, did everything the could to make Joseph comfortable as well a giving him the best quality of life. Joseph was a special person. So wise beyond his years. Every day was a blessing for him. When he spoke to you, you knew every word was from his heart. He really did live his life to fullest and knew every day was a gift. He touched the lives of everyone he met.
I ran the NYC Half marathon is 2014 for debra. Joesph was so proud of me. I will never forget that day as long as I live. I will never forget his beautiful smile as he saw me after I finished the race. It melts my heart every time I think about that day and how amazing it was for me, Joseph and my cousins. I am honored to get another chance to run for debra and in honor of my beloved cousin Joseph.
I know you must be saying to yourself, "what is EB?" Please continue reading. I am fundraising for debra for the NYC Half Marathon. I hope you decide to support my efforts to meet my fundraising requirement. This half marathon is very special to me. Any donation amount is appreciated and welcomed. I thank you in advance.
Please read more about EB.
What is Epidermolysis Bullosa (EB)?
Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of."
Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is lengthy and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability, and in some cases early death.
Epidermolysis Bullosa can result from a genetic mutation in one of 18 genes. These mutations, or errors in the genetic code, do not allow the body to either produce an essential protein or produce a working form of the protein thus resulting in extremely fragile skin. EB can also be an autoimmune disease in which the body produces antibodies to the structural components of the skin. The severity of EB is generally dependent upon many factors including type, subtype, and inheritance pattern. EB has been categorized as encompassing 5 major types (Simplex, Junctional, Dystrophic, Kindler Syndrome, Aquisita) and 31 subtypes, therefore it is commonly referred to as a group of disorders. Other manifestations of EB include: anemia, cardiomyopathy, syndactyly (fusion of the fingers and toes), renal insufficiency, dysphagia (difficulty swallowing), malnourishment, cancer, constipation, osteoporosis, muscular dystrophy, and pyloric atresia.
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