This May I will be running the Providence Half Marathon with the Running for Rare Diseases Team at Genzyme/Sanofi. A large group of people will be running either the Boston Marathon, Providence Marathon, or Providence Half Marathon. I have run the Boston Marathon with the team in previous years and the spirit of this group is like no other. We are the voice for so many patients with rare diseases that not many people have heard of. We are individually paired with a Patient Partner and it is our job to raise awareness for these individual patients and their disease that they live with every day. Visit our page and read our blog posts! running4rare.org
This year I am paired with a multi-talented 10 year old named Rebecca. Rebecca loves dance, ice skating, fashion, and her Goldendoodle Leila. Oh yea, and Frozen, what kid doesn't love Frozen?! Rebecca has multiple diagnoses so she represents the Mastocytosis community. Mastokids.org and tmsforacure.org are some great websites her mom shared with me to learn about this disease. Mastocytosis is a disease where the body produces too many mast cells. This can cause a variety of unpredictable symptoms in children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods.
Please consider supporting this cause with me and sharing this page with anyone that might be interested.