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.
Seth is a motivational speaker and rare disease advocate who is passionate about using his personal experience to support the health community. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). At the age of 20, Seth also tested positive for the disease and is a gene carrier. He has been involved in the HD community for over 10 years
He is a nonprofit leader with 10+ years of experience in patient advocacy within the rare disease space. He has a successful track-record of public speaking and community engagement, including a talk at TEDxNatick.
Seth shifted his focus to support young people because he knows the importance of helping others find the proper resources to help deal with the everyday challenges. His hope is to be a mentor for young people who face adversity by sharing how taking control of his Huntington's Disease journey has given him opportunity, fulfillment, and hope.
Brett Chinn is a recruiting expert and career coach with close to 15 years of experience in the talent acquisition space with companies ranging from management consulting firms to non-profit organizations. Brett has been responsible for building and executing target acquisition plans and is adept at all aspects of recruiting, from developing job descriptions and interview coaching to working with managers to ensure measurable success. Brett also provides individualized coaching to help people identify and express their unique strengths in order to achieve their goals and career fulfillment.
As a young professional diagnosed with a rare disease (Ehlers-Danlos Syndrome) in her 20s, Brett knows firsthand how daunting and demoralizing it can be to try to balance career goals with health concerns. She is passionate about helping other young people with invisible illnesses or disabilities navigate this process, have equity in the workplace, and shed the stigmas associated with self-identification.
Brett grew up in Westchester, NY, and currently lives in Arlington, VA with her husband, Josh, and their two adorable cats, Franny and Lucy.
Scott Savran joined Scout Sports and Entertainment in October 2016. He is the Senior Manager of Property Consulting and Analytics for Scout 360 where he leads all cross-channel measurement and analysis for sponsorship valuation. Previously, Scott worked as a public accountant for 2.5-years at BDO USA, LLP. Most notably at Scout, his work with Monumental Sports and Entertainment led to the naming rights announcement of Capital One Arena and over the last 15 months has supported the Carolina Panthers in driving over $10M+ in incremental sponsorship revenue.
In 2019, Scott was named a Cynopsis Media Rising Star. He is originally from Framingham, MA and graduated from the University of Massachusetts Amherst, where he was a club water polo player and helped establish the McCormack Future Industry Leaders Conference.
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.
Lori Gorski is a dedicated biotechnology professional with more than two decades of communications and patient advocacy experience focused on rare disease communities. She began her career at the global public relations agency Brodeur Worldwide and eventually moved to an in-house role at Thermo Fisher Scientific, where she oversaw communications activities for 12 divisions worldwide, financial media relations, and executive communications.
Lori also spent eight years at Sanofi Genzyme where she led global communications for Rare Diseases and was the main corporate spokesperson for issues related to clinical development programs, product supply issues and disease awareness initiatives. She later joined their Global Patient Advocacy team where she initiated programs to support disease awareness, provide caregiver support and communicate clinical program updates.
In 2017, Lori began her own consultancy business and now advises biotechnology companies in the U.S. and Europe on patient advocacy and communications strategies. A graduate of Boston College, Lori is an active member of her community north of Boston, and is the mom of two boys.
Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne Muscular Dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for every person with a rare disease to be fully included in society.
Anthony is currently concentrating his energy on the social barriers that the pandemic has brought into the public view, such as the need for a virtual option for every in-person event and increased video game accessibility. That is why the Our Oddysey mission hits so close to home for Anthony - he has been striving for years to find a community that goes beyond just health and disease.
After graduating from Rutgers University, Anthony struggled to find a career due to the discrimination behind closed doors that companies utilize against people with disabilities and people in wheelchairs. Amicus Therapeutics was the first to provide him an opportunity to use his abilities as the Internal Digital Communications Associate partnering with employees to unify brand, people, and message.
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.
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.
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 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 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.