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 responsible for globally raising awareness of The Ehlers-Danlos syndromes and hypermobility spectrum disorders (HSD). She manages coordinated medical collaboration, raising funds for research and focusing on the progression of EDS and HSD throughout the world.
In Lara’s previous role at EDS UK, in just five years she went from being the only member of staff to managing a team of six staff and 45 volunteers and increasing their membership, social media presence and income substantially.
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 specialized rheumatology CRG (Clinical Reference Group) working with the NHS and she regularly works with umbrella organizations lobbying in parliament. She is a member of the Patient Empowerment Group for Rare Disease UK and in 2016 Lara graduated after completing expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI.
Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the AJMG, March 2017 and serves on the steering committee of the International EDS Consortium.
Jessica Adelman joined our team as Program Manager in February 2017. She is involved in communications, development, and administration. She joined our staff after a working with the Society as a grant writer.
After receiving her Hypermobile Ehlers-Danlos syndrome diagnosis in 2007, Jessica attended her first Ehlers-Danlos National Foundation conference in 2008 and has been involved in the EDS community ever since. In 2011, she founded EDSOK, a local support, outreach, and advocacy organization for individuals in Oklahoma with Ehlers-Danlos Syndrome. She currently serves as a Co-Leader for the group, organizing monthly meetings and awareness activities as well as maintaining an active online community. In 2015, she spoke in front of the Oklahoma House of Representatives for May Ehlers-Danlos Syndrome Awareness Month.
Jessica received a Bachelor’s Degree from Austin College in 2010 with a major in Public Health Policy and a minor in Biology and Exercise and Sports Science. She has continued her education with independent study in grant writing and nonprofit management. She worked previously as an Independent Grants Consultant for various nonprofit organizations.
Jessica lives in Tulsa, Oklahoma with her partner and their two dogs. In her spare time, she enjoys reading, geocaching, and visiting national parks.
Patient Expert Panel
Would you like to become a Patient Expert? Becoming a patient expert means representing the full spectrum of the patients affected by The Ehlers-Danlos syndromes and hypermobility spectrum disorders. Training will be given and you will be expected to take part in meetings, conference calls and publications where appropriate. The patient expert panel is made up of the patient representatives that sit on the EDS International Consortium, there is one expert per group or committee and we are currently recruiting for a number of our groups.