By Laura Gossman

Author’s Note: In a recent interview Dr. Jimmy Lin, the founder and president of Rare Genomics Institute, shared his story of how RGI began. RGI is a non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. They bring together scientists who share in the passion for helping rare disease patients and leverage the crowd-funding capabilities of the Internet to bring hope of a cure to their patients.

When Dr. Jimmy Lin studied at Johns Hopkins University, he encountered a young boy with a very rare disease with limited options due to lack of research. Thus began his journey in founding Rare Genomics Institute. It was because of this young boy’s life that he began to see a need to somehow leverage research in science to help families find the answers they need.  “Parents often go above and beyond the call of duty to find answers…from visiting various hospitals to doing their own research. The dream of RGI was to empower them as individuals and give them a platform and tools so that a community could surround them,” shared Lin.

Robert and his mother Jeneva. RGI helped find his gene. Robert is one of 9 people in the world with this disease.

Robert and his mother Jeneva. RGI helped identify the gene that caused his disease. Robert is one of 9 people in the world with this disease.

Comprised of all volunteers, RGI launched as a non-profit to give families afflicted by rare genetic disorders access to genome sequencing and expert analysis. Since most rare diseases are genetic in nature, they believe that genome sequencing has the power to help these patients in a way that conventional diagnostics cannot. However, most families affected with rare diseases are under financial strain, making access to such technologies difficult.

Because each individual disease affects such a small number of people, little funding is available from conventional sources to study these conditions. Consequently, these patients are left with neither hope of a cure nor understanding of the disease. To address this need, RGI acts as a hub to help families raise funds and connect them to scientists who can help.

Dr. Jimmy Lin, MD, PhD, MHS, in one of the research labs where genome sequencing is performed.

Dr. Jimmy Lin, MD, PhD, MHS, in one of the research labs where genome sequencing is performed.

In reflecting upon the obstacles that RGI faced in its start-up phase, Lin shared that because he and the rest of his team all have a background in science, none of them had any experience in starting up a non-profit or social enterprise. He admits that they were probably naïve, but also optimistic in at least trying something to address the need.

As a new non-profit, they soon realized they needed to build their infrastructure to serve these kids and their families better. This is where Dr. Lin’s experience with Praxis as one of their first fellows in 2011-2012 proved to be invaluable. Praxis mentors and peers helped RGI lay the foundation from strategy, planning, and metrics to board development, fundraising, and marketing. “I think RGI benefited the most because unlike the other fellows, we were completely new to this arena. We were beginners and they helped make our dream not just into wishful thinking, but into an international organization,” states Lin.

Initially, Dr. Lin considered various models for the organization; for–profit, non-profit or a hybrid. RGI landed on going with non-profit because the very rare diseases that they were passionate about helping are the same diseases that do not stir interest from for-profit organizations.  There are some rare diseases that do make money, but it is the ones that don’t make money that get neglected the most.

The other main reason they decided a non-profit model was best was because of its two-fold purpose. “First, we want the families to be engaged and experience the community aspect during such a difficult season with their child. Secondly, the non-profit model was a better fit because the research is not the product,” reflected Lin. Ultimately, the “product” is the care for the patient and families. Lin shared that “often it is hard for families to say what they need and RGI provides that vehicle for them to communicate.”

Laptop showing a crowd-funding campaign for Robert, pictured above.

Laptop showing a crowd-funding campaign for Robert, pictured above.

Today, RGI’s impact reaches far beyond U.S. borders. Because of the demand, there are RGI outposts or chapters in Israel, India, Singapore and Malaysia. Patients from abroad also travel to the U.S. A father from Chile recently, with the help of RGI’s platform, organized fundraising events like a bingo and raffle night to raise funds for his child. Most families, on average, have to raise approximately $7,000-$8,000 for the sequencing research, which may result in an eventual diagnosis/treatment. Lin states, “While there is a threshold for families to have basic access to the internet and English speaking abilities, we assist people of all socio-economic classes around the globe.”

If you or someone you know is faced with a rare disease without many answers or treatment options, I encourage you to connect with RGI. If you simply want to join their efforts as a volunteer they gladly welcome that too. While it may be the science that aids in the physical healing, it is the community that surrounds them that provides the hope and human touch along the path.

Laura Gossman lives in Pasadena, California. She is the Director of Operations at the Max De Pree Center for Leadership and a recent new mother to son Benjamin and wife of Adam Gossman. She received her M.A. in Cross Cultural Studies from Fuller in 2006.

Fieldnotes Magazine is a publication of the Max De Pree Center for Leadership at Fuller Theological Seminary. We would love to hear from you about people, businesses, or other organizations we can interview or feature. Please email the editor at Fieldnotes Magazine.

 

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