060: Sneha Dave, Founder of Health Advocacy Summit and CCYAN
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A senior at Indiana University majoring in chronic illness advocacy and journalism, Sneha Dave is no stranger to #SpoonieLife. Diagnosed at the age of six with ulcerative colitis (UC), she is the founder of Health Advocacy Summit (HAS), an organization that hosts events in various cities around the country to provide education, insight, and community to an often underserved patient population affected by chronic illness: young adults transitioning from pediatric to adult care. HAS’s sister organization, the Crohn’s and Colitis Young Adults Network (CCYAN), connects the IBD youth community around the world. An advocate through and through, Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and contributed to U.S. News and World Report, Yahoo! News, Huffington Post, and others. In 2018, the We Are Family Foundation chose her as a Global Teen Leader through its Three Dot Dash program. Sneha has completed a research fellowship in health policy at Harvard T.H. Chan School of Public Health, where she is continuing research as an undergraduate in health care related to young adults. She has also interned at the Crohn’s and Colitis Foundation Headquarters and Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. She created and chairs the first disability caucus in Indiana, and has served on the Democratic National Committee Disability Policy Subcommittee and Women’s March Disability Caucus. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. She was previously a national policy fellow and now serves as the youngest director on the board for RespectAbility, a nonprofit fighting stigma and advancing opportunities for people with disabilities. Sneha has spoken at Stanford Medicine X; at the Harvard Youth and Public Health Summit; the National Academies of Science, Engineering, and Medicine; and other major avenues. She is also a national ambassador for the Invisible Disabilities Association and Lyfebulb. Sneha is passionate about advancing health care in rural communities, and is an ardent proponent for greater transparency in the patient advocacy space.

Tune in as Sneha shares…

• how she was diagnosed with ulcerative colitis, and what treatment was like in the early stages of her illness
• that she used the restroom up to 20 times a day in her worst flares
• that she weighed about 60 lbs during her freshman year of high school
• that she had a full colectomy in her freshman year of college (removal of her large intestine and colon)
• that she now lives with a j-pouch and has chronic antibiotic-refractory pouchitis —and is still seeking a viable treatment option for this condition
• why bowel disease is difficult to discuss as a young adult
• background on 504 accommodations (disability accommodations for US high school students)
• how Sneha’s mom has been an advocate for her over the years — and how they’ve become closer as a result
• how she seeks accommodations for her illness, and the barriers she’s had to surmount to do so
• her journey to identifying as disabled
• why she started Health Advocacy Summit
• the urgent need for peer support among young women with chronic illness, in particular
• why young adults have such particular needs in terms of disability support, community, and access

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