Our mission is to find a cure for Systemic Juvenile Idiopathic Arthritis (SJIA), a serious and sometimes lethal childhood disease. We will do this by funding promising research about the causes sJIA and new treatments approaches, prioritizing research that will yield results in the next five years. We will also create a web based network and information clearinghouse for sJIA families, helping them find latest findings, clinical trials and research studies they can participate in.
2014 – 2016
Rashmi Sinha and Jonathan Boutelle started working on finding a cure for SJIA in 2014 after their son was diagnosed with SJIA. We have built multiple startups together and decided that our next startup is this foundation and we want to do whatever we can to accelerate the pace of research in this field.
From 2014-2016, Rashmi and Jon continued their SJIA work through the Sinha Boutelle Family Foundation.
In 2017, Rashmi & Jon founded the SJIA Foundation, a 501c3 non-profit organization to expand & accelerate their work on SJIA.
Board Members for the SJIA Foundation include Dr. Rashmi Sinha, Jon Boutelle and Dr. Matt Might. Dr. Matt Might is director of the Personlized Medicine Center at the University of Alabama, Birmingham.
The Foundation also has a SJIA Parents Advisory Board which includes 3 parents of children with SJIA: Leah Nicholson Bush, Kari Cupp & Sabrina Dunplap. The Foundation works closely with the SJIA Parents Network on Facebook which includes 800 parents of children with SJIA.
OPPORTUNITY FOR IMPACT
We believe that there is a unique opportunity to have impact in a rare disease that does not currently get a lot of research focus, funding or attention from pharmaceutical companies. Since this is a rare disease, its a challenge for researchers to find enough study participants to move research fast. By bringing SJIA families together we can address this problem and accelerate the pace of research.
We think there is a unique opportunity to have an impact for the following reasons:
- The web can help us connect SJIA families bring them information about research studies or clinical trials they could participate in. This is only possible now that large percentages of the global population are online and connected through social networks.
- We bring a single minded focus to this problem. There is no organization with a singular focus on SJIA right now. We are very inspired by many other rare disease foundations which have effectively focussed research efforts to drive huge advances in the treatment of a particular disease.
- There have been huge advances in biology and medicine in the last decade. Insights, lessons, technologies, treatments, and drugs from treating other diseases can be brought to bear on SJIA if the right translational research is performed.
- There is a core group of researchers who are interested in this field and are doing promising work.
- The improvements over the last 10 years in the treatment of SJIA are impressive. Biologics have helped many patients live happier healthier lives.
Rashmi and Jon previously created SlideShare, the presentation-sharing community currently that gets 100 million unique visitors a month and ranks in the top 200 of all websites on the internet by traffic. Ã‚Â They sold SlideShare to LinkedIn in 2012, and now run the Systemic JIA foundation from their house in San Francisco.
Jonathan Boutelle is a technology leader, software engineer, and entrepreneur. He was the cofounder and CTO of SlideShare, which is the world’s largest community for sharing presentations. He built and scaled the site to millions of visitors, ran tech teams across two continents, and gave talks about how to build great software. SlideShare was acquired by LinkedIn in 2012.
Before cofounding SlideShare, Jonathan worked as a software engineer at Commerce One and Advanced Visual Systems. He studied Computer Science and Psychology at Brown University.
Jon is an active angel investor in tech startups in both India and USA, having invested in drone startups, health technology and consumer internet startups. He is also working on an ecommerce side project of his own.
You can read his blog at www.jonathanboutelle.com or follow him on twitter @jboutelle.
Rashmi Sinha is an entrepreneur, designer, and scientist. She was the cofounder and CEO of SlideShare, which was the world’s largest community for sharing presentations. SlideShare was acquired by LinkedIn in 2012. In 2012, Rashmi was named as one of ten Fortune Magazine Most Powerful Women Entrepreneurs. Ã‚Â She also has been named the World’s Top 10 Women Influencers in Web 2.0 by Fast Company and is a frequent speaker at technology conferences.
Rashmi has a PhD in Cognitive Neuropsychology from Brown University – her research was about understanding memory deficits in Alzheimers and Parkinson’s patients. She did a PostDoc at the Information School UC Berkeley doing research on search engines and recommender systems.
You can read her blog at www.rashmisinha.com or follow her on twitter @rashmi.
We recently added a Parents Board to better guide the direction of the Foundation. Check out the board here: