Board of Trustees

Seth Rotberg

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Seth is the co-founder of Our Odyssey an avid dog lover. His hobbies include conquering his fears, reading innovative books, and traveling both domestically and internationally.

Kristina Wolfe, MSPH

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Kristina is the co-founder of Our Odyssey and a "make the impossible inevitable type." Her hobbies include (but are not limited to) crossing things off of her bucket-list, doing anything active and outdoorsy, surfing, fishing, traveling, listening to audiobooks, writing and being creative.

Gary Ramphal

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Gary Ramphal a finance professional, investor & Entrepreneur has extensive experience working with early-stage companies to arrange funding, create business plans and strategies. Gary has spent the last two decades as Founder and Managing Partner of Global Resource Partners, Inc. (GRP), a business incubator and consulting firm that provides venture development services to private and publicly traded enterprises. Prior to GRP, Mr. Ramphal held leadership positions in the professional services industry. 

  

Candace Lerman

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Candace Lerman, Esq., is an attorney, consultant, and author of the rare disease blog, RareCandace.com. She earned her Juris Doctorate with a concentration in Health Law at the Shepard Broad School of Law at Nova Southeastern University in Fort Lauderdale, Florida and a certificate in Healthcare Compliance from Seton Hall University School of Law. 


A rare disease patient, Candace researched and repurposed a drug to put her blood disorder into remission. She works with members of Congress on federal healthcare policy, and serves on the board of Bridge the Gap- SYNGAP Education and Research Foundation. 


Candace is Of Counsel to the Lerman Law Firm (Cathy Jackson Lerman, PA), where her practice centers around health, cannabis, and corporate law.  

Justin Birckbichler

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Justin Birckbichler is a men's health activist, testicular cancer survivor, and the founder of aBallsySenseofTumor.com. In November 2016, he was diagnosed with stage II testicular cancer at the age of 25. Throughout his diagnosis, surgery, chemotherapy, and being cleared in remission in March 2017, he has been passionate about sharing his story to spread awareness about testicular cancer and promote open conversation about men's health.


In addition to his work through ABSOT, Justin's writing has appeared in Cure Magazine, I Had Cancer, The Mighty, The Good Men Project, Stupid Cancer, and more. Outside of the cancer world, Justin is an instructional technology coach, amateur chef, technology aficionado and avid reader. He lives in Fredericksburg, VA with his wife, cat, and dog.

Anna Laurent

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Anna Laurent is a Prevention Education Specialist at Lotus Sexual Violence Resource & Children’s Advocacy Center. She designs, facilitates, and tracks evidence-based prevention education programs across the Purchase Area region. Born and raised on a family farm in Kentucky, she was diagnosed with Alagille Syndrome as an infant and has been advocating for those impacted by rare diseases and disabilities for many years. 


Anna co-founded a Facebook support group for teens and young adults with Alagille Syndrome and became the first Junior Board Member of the Alagille Syndrome Alliance in 2015. She served as a Board Member and was the keynote speaker at the 7th International Symposium on Alagille Syndrome. In 2018, Anna joined the Young Adult Representatives of RDLA and was a speaker at the Legislative Conference for Rare Disease Week on Capitol Hill. She has since lobbied on Capitol Hill advocating for those impacted by rare diseases and spoken on disability rights activism at the Empower Kentucky Youth Leadership Conference in 2019. 

Advisory Council

Jean Campbell

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 Jean Campbell is nationally recognized as one of the leading rare disease patient advocates with a record of success in fundraising, patient advocacy and corporate relations. Jean served nearly two decades with the National Organization for Rare Disorders (NORD) in senior management positions including Vice President of Development.

Jean formed JF Campbell Consultants LLC, in 2010. Her expertise in patient advocacy, organizational governance, corporate relations, patient assistance programs and program management is valuable to all size organizations. Her clients include non-profit health organizations, pharmaceutical and biotech industries.


Jean provides valuable mentorship to start-up and growing patient organizations helping to strengthen their infrastructure in order to better serve their mission, members and communities. Jean is a co-founder and board member of the Professional Patient Advocates in Life Sciences (PPALS), a member of the Rare Collective and an Erdheim-Chester Disease Global Alliance Board Member. 


Steve Gullans, PhD

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Steve Gullans is an experienced biotech exec, venture investor, scientist, entrepreneur, and author. He is CEO of Gemphire Therapeutics, Inc., which he joined after 10 years as a Managing Director at Excel VentureManagement, a health care investment fund he co-founded. He has held executive and board positions in a number of private and public companies. 


Steve loves innovation and has spoken widely, including at TED, TEDMED, andTEDx. He co-authored Evolving Ourselves, a book that provides a sweeping tour of how humans are changing the course of evolution-sometimes intentionally, sometimes not. Steve began his career as a professor at Harvard Medical School where he published more than 130 scientific papers and was elected a Fellow of the American Association for the Advancement of Science. Throughout his career he has focused on translating scientific advances into solutions that can help patients.

John Lee, MD, PhD

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John is a cardiologist with more than 15 years of combined medical practice and biopharmaceutical management experience. Before joining PhaseBio, John served as Vice President & Global Head of the Cardiovascular Center of Excellence at Quintiles Transnational Corp., where he led drug development and product lifecycle management, and established key partnerships to accelerate clinical development and research. 


Prior to Quintiles, John held several positions at Bristol-Myers Squibb, including Executive Director, Head of Cardiovascular/Metabolic (CV/MET) Therapeutic Area. He also served as Medical Director at Merck & Co. Earlier in his career, John was an attending cardiologist in the University of Pennsylvania's division of cardiovascular medicine. John received a BA in biological sciences from Harvard University and an MD and PhD in biochemistry from Boston University School of Medicine.

BJ Viau

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 B.J.'s passion is to help families impacted by rare diseases and disorders. He grew up in a family impacted by Huntington's Disease and over a fifteen year stretch created and ran a basketball shooting event that raised 1M dollars for education and research. In 2012, BJ co-founded the international non-profit, Huntington's Disease Youth Organization (www.HDYO.org) that supports, educates and motivates young people impacted by HD around the globe.  


He currently sits as HDYO's Board Chair.   Professionally, he works for Horizon Therapeutics in the advocacy department where he strives to collaborate with numerous patient groups focused on rare diseases. He has an undergraduate degree in marketing from University of St Thomas and an MBA from Northwestern's Kellogg School of Management.   He resides in South Florida with his wife and step daughter.



Dakota Fisher-Vance

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Dakota received her B.A. in biology from Bryn Mawr College in May 2011 and a Familial Adenomatous Polyposis (F.A.P.) diagnosis two months later. Reluctantly, she traded in her post-college job for surgical gowns to have her cancerous colon removed. While working abroad in 2013, she noticed another trick up F.A.P.'s sleeve and was diagnosed with a desmoid tumor. If anything, this tumor confirmed that while she hoped to be one in a million, statistically speaking, she's closer to four in a million.


Patient advocacy fills the void left by her colon. She's the co-founder of Young Adult Cancer Connection which hosted Cancervention, Philadelphia's first young adult cancer conference, and the creator of FAPulousTV, the first YouTube Channel dedicated to discussing F.A.P. She currently works for Horizon Therapeutics as a Patient Advocacy Manager.


Alan Rotberg

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Alan Rotberg is an entrepreneur and event planner who has a background in food distribution and music management. He started his career as a music booking agent and between 1976 - 1999 he booked a variety of acts at music venues and clubs such as the Go-Gos, Joan Jett , Cheap Trick, Bob Dylan, Violent Femmes, and the Ramones. 


He then shifted his career into the food distribution business, where he started his own company called Eastern Marketing & Distribution. He started by distributing sugar free, fat free, and non-trans fat cookies in the late 90's, and eventually became the leading gluten-free distributor in New England from 2001 - 2011.