On March 23rd, the Jansen’s Foundation was invited to an executive-level reception hosted by BiotechTuesday and Mass Innovation Labs with the Center for Rare Neurological Diseases at the Massachusetts General Hospital.  This was their first Annual Industry-Academia Convocation on Rare Disease and a unique opportunity to foster dialogue between research and the biotech industry to advance therapies for rare diseases. 

Dr. Gardella, Nadia Bodkin, and Neena Nizar

TJF also had the exciting experience of meeting with Levi Gershkowitz, a photographer and writer, who creates compelling patient ethnography for education, advocacy and marketing—with a focus on rare diseases.

Levi Gershowtiz, Nadia Bodkin and Neena Nizar

Living in the Light, founded in 2012 by Levi, began as an advocacy initiative utilizing the potency of photography and compelling personal narratives to educate about the realities of life faced by those with rare diseases. Since then, it has evolved to meet the complex needs of the rare disease community to ensure that its members are truly seen and heard as people, not patients. 

We also had the privilege to meet Nadia Bodkin!  Nadia is a seasoned rare disease advocate, born with 3 debilitating rare diseases complicated by several associated conditions. Of course that didn’t stop her! She served as the chairperson for Rare NJ, a rare disease advocacy coalition and was the Executive Director for the Rare Disease United Foundation. She also founded and has been directing EDSers United, a rare disease patient advocacy organization focused on Ehlers-Danlos Syndrome.

We know our meeting with Levi and Nadia is the start of a beautiful friendship; we share a common theme: we are determined to make a difference in the lives of those affected by rare conditions.