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  • Sneha Dave

Alumna builds community for people with chronic medical disabilities

By: Jenna Williams

Tuesday, June 14, 2022

Sneha Dave

Sneha Dave is passionate about summits.

Dave, BAJ’20, climbed Mt. Kilimanjaro as a student at IU and aims to cross the Seven Summits, the highest mountain on each continent. She is also the founder and executive director of Generation Patient — previously known as Health Advocacy Summit. 

Generation Patient is a patient support and advocacy organization created to facilitate community for young people living with chronic health conditions. Dave created the organization as a freshman in college.

The nonprofit organizes events, online programs and advocacy initiatives for young adults living with chronic and rare conditions to ensure they have the opportunities and resources to thrive, Dave said.

Dave has lived with severe ulcerative colitis since age 6.

“It’s really part of my identity,” Dave said. “It’s important for people to recognize that for a lot of people, chronic medical disability is an identity. It’s part of who we are,” she said.  

She has been passionate about community building for young people with chronic medical disabilities for years, she said.

She created Generation Patient and its only disease-specific program, the Crohn’s and Colitis Young Adults Network, to help create support systems for young adults with chronic conditions. 

Through her role at Generation Patient, Dave has organized summits bringing together medical representatives, health experts, advocates and hundreds of international attendees. The first summit occurred in Indianapolis and has grown to various locations since its founding.

“These past summits that we did were really local and community-based, and I really loved that aspect of it because I think there’s a lot of power to in-person connection,” Dave said. “But since the pandemic, we’ve held two international virtual summits where we’ve brought together over 350 young adults with chronic and rare conditions from around the world.”

These summits included sessions on entrepreneurship with a chronic illness, media representation, body image and reproductive health, Dave said. 

The third international summit is being planned for Sept. 29-Oct. 1. It aims to address relevant topics under-addressed in the medical system.

Generation Patient also offers seven virtual community meetings per month. Recently, the organization has increased its focus on higher education outreach and advocacy, Dave said, particularly with the ongoing pandemic and its evolving guidelines.

The organization does a little bit of everything, she said.

Her role at Generation Patient includes working with foundations, fundraising, guiding programming, and balancing the legal and financial aspects of a growing nonprofit. She has spoken on the Hill, followed legislation and served in a multitude of capacities for a plethora of health organizations.

Dave has completed a research fellowship in health policy at Harvard’s School of Public Health, interned at Pfizer Global Headquarters in health economics and outcomes research for inflammation and immunology, and spoken on Capitol Hill. She served on the Democratic National Committee Disability Policy Subcommittee, is part of the Midwest Comparative Effectiveness Public Advisory Council and serves on a patient engagement collaborate for the FDA.

She is the youngest director on the board for RespectAbility, a national nonprofit dedicated to empowering people with disabilities, and this is a mere selection of all her resume boasts.

Dave learned how to do her job mostly through practice, she said, but she also carries lessons gleaned through her time at IU. She studied journalism and chronic medical advocacy through IU’s individualized major program. She was a recipient of The Media School's Joseph A. Berman Scholarship, which supports undergraduate journalism students with an interest in disability issues.

Her IMP coursework included classes that taught her to think critically, which she said is vital in health spaces.

“For my position in particular, it’s so important to be critical of everything you see,” Dave said. “Because everything really is follow-the-money in the health space — and that’s something I learned a lot about both with my journalism major and my chronic illness advocacy major — just being able to recognize the importance and value of independence.”

This independence contributes to the organization’s authentic voice, she said, as does its composition of entirely young adult patients. 

“We get to have our authentic voice and perspective as patients first and foremost, but also as an organization that’s trying to better health care for the next generation of patients,” Dave said.

Disability is continuing to grow, Dave said, pointing, for example, to the existence of long COVID and the rise in new and complex conditions. 

“The more the community comes together and becomes vocal, there’s going to be a lot of systematic barriers that are going to be erased, whether that’s in higher education or in health care,” she said. “It’s really important to recognize that at one point or another, you yourself will be utilizing the medical system, and so we really need everyone to advocate for what’s important in the health care space.”

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