Shane Robinson has served as the executive director of the Ehlers-Danlos National Foundation (EDNF) since 2011. He is now co-executive director of the Ehlers-Danlos Society, along with Lara Bloom.
Prior to his time with EDNF, Robinson worked for a variety of nonprofits around the globe in the health, education, and environment sectors. He was a Peace Corps volunteer in Zambia from 2002 to 2005.
In the fall of 2010 Robinson was elected to a four-year term in the Maryland House of Delegates representing Maryland’s 39th legislative district; he was re-elected in 2014.
Robinson earned undergraduate degrees in biology and Spanish at the University of Nevada, Reno, and a graduate degree in sustainable development at the SIT Graduate Institute in Brattleboro, Vermont.
On weekends Robinson teaches scuba at the Atlantic Edge Dive Center, and ski patrols at Whitetail ski resort. He also serves as president of Amigos de Iracambi, US, which supports the Iracambi Atlantic Rainforest Research and Conservation Center located in Minas Gerais, Brazil, and he sits on the boards of the Chesapeake Bay Trust and the University of Maryland Dental School. Shane enjoys running, skiing and travel.
Robinson resides in Montgomery Village, Maryland with his wife, Mary, and his children, Gordon and Paige.
Lara Bloom is the Co-Executive Director of The Ehlers-Danlos Society and is responsible for raising awareness of Ehlers-Danlos Syndrome globally, managing coordinated medical collaboration, raising funds for research and focusing on the progression of EDS throughout the world.
Previously Lara lead EDS UK for five years before taking up her international role. She co-produced and appeared in the documentary ‘Issues with my Tissues,’ which raised awareness of Ehlers-Danlos Syndrome and followed her attempt to become the first known person to complete the London Marathon with EDS.
Lara speaks at conferences all over the world, lectures to medical students and professionals and supports specialists in the field by offering her experience as a leading patient expert in rare diseases.
From 2013-2015 Lara was part of the specialised rheumatology CRG (Clinical Reference Group) working with the NHS and she regularly works with umbrella organisations lobbying in parliament. In 2015 Lara graduated as a fellow from the patient expert training course: European Patients Academy EUPATI.
When not traveling around the world to raise awareness Lara lives in West Hampstead in London with her partner and dog Ripley.