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 and sits on the Board of Trustees for the Huntington's Disease Youth Organization (HDYO).
He is a nonprofit leader with over nine 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 and Sanofi.
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.
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.
Morgan Manella was diagnosed with Crohn's Disease at the age of eleven. Although this debilitating illness has imposed many challenges on Morgan's daily life, Morgan decided that she would not allow her disease to get in the way of her happiness or success.
At a young age, Morgan realized that there are many children suffering to such an extent that they are unable to develop a similar outlook. When she was 15, Morgan founded the first teen support group in South Florida for children and young adults with Crohn's and Colitis. She was also a Keynote Speaker at the 2008 Book of Hope Luncheon where she spoke about the challenges of living with Crohn's and the steps she has taken to overcome this illness.
Morgan's experience with Crohn's has fueled her professional interests. Morgan studied journalism at Emory University, and she previously worked at CNN covering health and wellness. She is now a Platform Editor for the Wall Street Journal.