Sinha Boutelle Foundation

Sinha Boutelle Foundation is a private family foundation devoted to solving rare diseases. It was founded by Rashmi Sinha and Jon Boutelle, who are tech entrepreneurs. They previously founded SlideShare.net together, grew it and sold it to LinkedIn in 2012.

Sinha Boutelle Foundation is their effort to give back. The primary focus of the foundation is solving rare diseases. Through the experience of one of their kids, Jon and Rashmi have learnt a lot about rare diseases, including some of the astounding facts about rare diseases. There are more than currently identified 7000 rare diseases in the world. Most of them are pediatric. Many of these diseases are fatal. Since these diseases are rare, pharmaceutical are generally not focused on developing specific drugs. Treatment consists of repurposing drugs from other, more common diseases. Only a few hundred rare diseases have drugs approved for treatment. For many of the rare diseases, it takes an active parent / patient to bring patient community together, find funding for research, and work with pharma to encourage drug development. Yes, that is the state of affairs for many rare diseases!

Apart from rare diseases, Sinha Boutelle foundation provides support for a few other promising projects. The goal is to help projects that address an unmet medical need in a capital efficient manner.

Although our background is tech, we don’t focus on that in our charitable work. We try to solve important problems with an unmet need. We use tech and social media as a tool, when appropriate. But the goal is always is find solutions to problem at hand, using the most efficient means, whatever that might be.

Our primary focus: Systemic JIA Foundation

Sinha Boutelle foundation incubated the non-profit charity focused on Systemic JIA (a rare inflammatory childhood disease). For the first four years, the Systemic JIA foundation was exclusively funded by our family foundation. Over this period, the Systemic JIA Foundation has built strong network of parents, scientists researching this disease, pharma companies developing treatments and regulators. The Systemic JIA Foundation has also organized four scientific conferences, and two Family conferences focused on Systemic JIA.

In 2018, the Systemic JIA Foundation became its own independent entity and a IRS approved 501(c)(3). It has also launched fundraising through a network of parents.

Other Projects we support

Creating a sustainable funding model for liver transplants in Bangalore, India.
Providing a home for HIV positive street children in northern India