Michelle Douris and I are raising money that will go to the Eastern Pennsylvania Chapter of the National Hemophilia Foundation to help find a cure for hemophilia (a bleeding disorder where your blood does not clot properly). We are doing this for Michelle's son, Gavin, my husband, Mike, and all of the other hemophiliacs out there. Read below to learn a little more about Gavin and Mike.
Gavin is 12 years old and is severe factor 8 deficient with a tolerized inhibitor. He used to get IV medicines every other day yet still managed to get joint bleeds that caused him to either be in a wheelchair or need crutches multiple times a year. Back in November 2018, Gavin began taking Hemlibra, an injectable medicine that is meant to reduce the amount of bleeding episodes a patient has. Since Gavin began this medication, he has had no bleeds and no black and blue marks as he had before. Instead of receliving medicine every other day, Gavin only needs to be injected with Hemolibra every other week!
Mike is 39 years old and is moderate factor 9 deficient. He also suffers from Degenerative Disc Disease and Fibromyalgia, both Chronic Pain conditions. Under normal circumstances, Mike would be able to have surgery and take medication to help ease his pain. However, due to his hemophilia, surgery and pain medications are not an option so he lives with pain and discomfort every day.
Unfortunately, Hemolibra is only available to Factor 8 deficient patients. With continued research and time, a medicine will become available to ALL Hemophiliacs!Please help support Gavin, Mike, and all of those people out there who live with hemophilia by purchasing a ticket to attend our Beef and Beer!