Thank you for visiting my fundraising page! I will be running the Providence, RI half-marathon on Sunday May 3rd in support of the "Running for Rare Diseases" Team.
Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. The National Organization for Rare Disorders (NORD) is a wonderful organization dedicated to representing all patients and families in the U.S. affected by rare diseases. This running team is also dedicated to the raising of funds & awareness for rare diseases - together, we will make a difference in hundreds of patients & families' lives as we train towards race day in May 2015.
Although I've run many half and full marathons I can't think of a better reason to get out there with my peers and hit the pavement for 13.1 miles. My goal is to not only finish the race, but to raise $500 in 17 weeks. With your help we can accomplish both! Let's do this!
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!
One thing that makes this opportunity so special is I've had the chance to get to know a person who's spent their life living with a rare disease. Her name is Jana and this is her story in her words...
I was diagnosed with Chronic Intestinal Pseudo Obstruction at a few weeks old. This condition affects the ability of the nerves in the digestive tract to move food and nutrients through the intestines properly, impacting my digestion and absorption. After my first two surgeries I was placed on TPN, which is life-saving IV nutrition that has fueled me for 30 years. Medical history is typical of most who live with chronic illness, 20+ surgeries, lost count of hospitalizations, and daily routines and adaptions that help me to function. Most days my body feels very weary, but my spirit feels so incredibly grateful. I was able to attend college where I received my Bachelors in Social Work. I married an incredible man who loves me well, feeds me well, and builds me forts in the living room. My family all lives so close that I can go from my house to their couch in less time than it takes to watch a Seinfeld episode. I am crazy blessed. No kids, just one spoiled rescue dog and the cutest nieces and nephews in the world. My disease has revamped the way I do life, my heart to work and be an active and present part of daily life sometimes has to take a backseat to the limits of my body. I get to be creative in the way I spend my energy and intentional on choosing to do a few important things, but doing them well. The idea of borrowing a set of legs to run on my behalf is beyond exciting, it is something I would not otherwise be able to do. What an incredible opportunity.