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Freshman who battles chronic illness founds her own nonprofit

Nov. 30, 2016

At 6 years old, Sneha Dave was diagnosed with ulcerative colitis.

Sneha Dave

Sneha Dave is a freshman at IU. | PHOTO BY IU COMMUNICATIONS

The chronic inflammatory bowel disease that causes ulcers on the large intestine is also an autoimmune disease, which means that in addition to her body shutting down from the disease, her immune system was attacking itself. She spent the majority of her childhood in and out of the hospital as her body deteriorated. As a high school freshman, Dave weighed just 60 pounds.

Then she underwent a life-changing surgery. Dave opted to have her large intestine removed. Four years and several major surgeries later, the now IU freshman is in remission and using her personal experience to champion for others just like her.

While she was struggling during the worst years of her sickness, Dave felt alone in the fight. She saw a need for a support system for those battling inflammatory bowel diseases, so she started her own nonprofit, The Crohn’s and Colitis Teen Times.

"I believe that the chronic illness community is often forgotten about," Dave said. "It’s really important to me to use my voice for the millions of sufferers of all chronic diseases. If you see a problem, you have to take it into your own hands, because if you don’t do something about it, no one will."

Through her nonprofit, Dave strives to provide support and outreach to teens suffering with Crohn’s and colitis, two common inflammatory bowel diseases. She does this outreach through blog posts and newsletter content written by those and for those diagnosed with the disease. The nonprofit is led by Dave and a committee of leaders from around the U.S. who suffer from Crohn’s or colitis. The site has been popular, garnering views from all over the world, and Dave is reworking the nonprofit to accommodate a more diverse crowd of users.

"We are really trying to reach out to this population in a personal way," she said. "Big companies can provide educational support, but it’s really difficult for them to provide the relatable support that we need."

Advocacy at work

In addition to her nonprofit work, Dave has her hands in many advocacy projects. This year was her third year speaking at Indiana University Dance Marathon on behalf of Riley Hospital for Children at IU Health, where she was a patient for years.

Sneha Dave gives address

Dave travels nationally as an advocate. Here, she serves as a delegate to support the United Nations' 17 Sustainable Developmental Goals, which include good health and well-being. | PHOTO COURTESY OF SNEHA DAVE

She also works with pharmaceutical company Pfizer to help bridge the gap between the pharmaceutical industry and patients. She spent the summer before her freshman year of college interning with the Crohn’s and Colitis Foundation of America at its New York City headquarters, where she helped create patient advocacy programs.

As a delegate who helps support the United Nation’s 17 Sustainable Development Goals — which include good health and well-being, quality education and reduced inequalities among others — Dave travels around the United States attending summits to learn more about how these goals are being achieved. Because of her openness in discussing her experience with ulcerative colitis, Dave is particularly involved with the good health and well-being goal.

Most recently, in September, she attended the 2016 Social Good Summit. There, she was able to hear from speakers who are working toward advancing global health, such as Secretary of State John Kerry and Vice President Joe Biden. While she was in New York over the summer, she attended the 2016 NOVUS Summit, held at the United Nations Headquarters.

"It was such an awesome experience to sit in the U.N. General Assembly Hall and hear transformational speakers talk about the goals and how they are working to create sustainable change," Dave said.

Her advocacy efforts often take place on a national level, leading to published work in outlets such as U.S. News and World Report, The Huffington Post and Yahoo News.

Reaching new heights

However, Dave hopes to make an impact with her cause closer to home during her next four years at IU.

She decided to come to IU because of the sense of community she felt here, and she has received nothing but support from the greater IU community since she made campus her new home in August.

A series of recent coincidental events concluded in Dave speaking with Vice Provost for Student Affairs Lori Reesor. In telling Reesor about her platform, Dave said the dean expressed her support and encouragement for the work she is doing.

"I want to bring my advocacy work to IU directly," she said. "I think it would be great to have that support from my university and could be a great resource in continuing to raise awareness for ulcerative colitis."

Also on Dave’s list of goals? Climbing Mount Kilimanjaro. She is training to make the climb, which is no small feat for someone in the recovery stages of a disease. However, this is what motivates her. Being isolated, hospitalized and unable to participate for much of her childhood, Dave is determined to make an impact and live her life to the fullest.

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