My name is Swapna, and it is an honor to partner with my cousin, Bharath, for "Running 4 Rare," to raise money for the National Organization for Rare Disorder (NORD)/Undiagnosed Diseases Network (UDN) Patient Assistance Program. This program provides financial assistance to families who have exhausted all other alternatives for seeking a diagnosis. NORD will help cover the basic diagnostic testing needed for patients and families to apply into the Undiagnosed Diseases Network.
Why am I doing this? 28 years ago I was born with Short Bowel Syndrome, a chronic rare disease. Since birth, I have been survived on nutrition from an IV in my chest, and from a feeding tube in my stomach. In the last 28 years, I have had 63 surgeries, including a small intestine organ transplant in June of 2014, and bilateral hip replacements just last year. In my journey, I have found the importance of meeting others with my same rare disease as well as meet other rare disease patients. By doing this, I have learned a lot about my disease, found support, and have been able to help others. I couldn't have found the patient community I do have without the help of NORD. NORD not only hlped me meet other Short Bowel Syndrome and rare disease patients, but they have helped me live my purpose of advocacy. It just makes sense to me to give back to an organization who has helped me in so many ways.
My cousin, Bharath Surapaneni, is an avid runner, and is running the Chicago Marathon in honor of me and other rare disease patients. Bharath is a practicing Radiologist in Los Angeles, CA. The Chicago Marathon is his second marathon, with the New York City Marathon in 2015 being his first!
Please share our story using the hashtags #indiansontherun
Swapna & Bharath
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Swapna Kakani's Fundraisers
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