Alabama Rare is a grassroots organization to unite Alabama around the rare disease population. It acts to bring support for individuals & families, educate the broader community, bring awareness to the population's needs, and advocate for necessary change to improve healthcare delivery.
Alabama Rare was founded in 2017 by Swapna Kakani, a young adult born and raised in Huntsville, AL. Swapna was born with a rare congenital defect of the Small Intestine that led to the diagnosis of the rare disease, Short Bowel Syndrome.
This is Alabama Rare's first year to have runners in the Mercedez Benz Birmingham Marathon dedicated to raising money for the organization and we could not be happier.
More about the Runners:
Suresh Karne - Suresh Karne is a GI physician in Huntsville, AL. He regularly treats individuals with rare diseases and is a champion for Alabama Rare. Dr. Karne is also an avid marathon runner. He has a personal goal of running the 6 major world marathons. Already under his belt are the Boston, Chicago, New York, and Berlin Marathons. This will be Dr. Karne's first year to run the Birmingham Marathon.
Emma Tillman - Emma Tillman is a Pediatric Intensive Care Unit (PICU) Pharmacist at Riley Children's in Indiana and a PhD scientist. Emma also has her own rare disease journey. Emma was diagnosed with Gastroparesis and has required IV nutrition, and multiple gastric surgeries. Despite her health struggles however Emma always continued to work AND run as she is also an avid runner. Emma in 2014 despite all odds ran and finished the San Francisco Marathon while she recieved IV fluid boluses by her home infusion pharmacist on the sidelines. Emma also affectionately coined the hashtag #TPNStrong after being disheartened by the photos she found on the internet when she googled TPN. Emma wanted to instead flood the internet with people doing things outside of the hospital on TPN living their life to the fullest. It is now widely shared. Today Emma no longer needs IV nutrition and is eating well by mouth and she continues to run regularly. This will be Emma's first year to run the Birmingham Marathon and her first race of many in 2019 without IVs!