February 29, 2024
AAIDA co-hosted a special educational webinar for Rare Disease Day, 2024, with our friends at Uplifting Athletes on February 29th. Guest speakers include rare disease patients and advocates Rob Long, Michael Cramer and Lauren Dunlap.
Rob, Michael and Lauren will discuss the following:
- Perspectives from three individuals with rare conditions, life stages and their journey to include: Anaplastic Astrocytoma grade 3 cancer, Hepatosplenic T cell Lymphoma, Chronic graft versus host disease and Primary immunodeficiency
- Mental health impact in living with a rare condition(s)
- How loved ones can help address fear and anxiety when seeking a new healthcare provider
- Intimacy, relationships, dating and marriage and conversations involved in various stages of life
- Best practices in explaining your rare condition to others
- Codependence with caregivers and other relationships
Rob Long has been the executive director of Uplifting Athletes, a non profit dedicated to all 10,000 discovered rare diseases, since 2018. Rob has a steadfast commitment and connection to the Rare Disease Community as a rare brain cancer survivor and his passion and drive to advance the mission of Uplifting Athletes is inspirational. As a former star college football student-athlete, Rob is a former All-American punter at Syracuse University (SU). Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. Rob received his bachelors degree from SU and went on to pursue a Masters in New Media Management from the S.U. Newhouse School of Public Communications.
Michael Cramer is a 22-year-old cancer survivor, bone marrow transplant recipient, social media influencer and motivational hero. Before his diagnoses, Michael was a surfer, skater, and on the Olympic Development team for windsurfing. He traveled the world competing and was the funny one on the team and full of adventure. On July 14, 2020, Michael was diagnosed with a rare and aggressive cancer, Hepatosplenic T-cell lymphoma. Less than 200 cases have ever been documented and the average survival rate is 8 months. Miraculously, more than 3 years later, he is still here! Although he is still in treatment for many life-threatening complications from his cancer and bone marrow transplant, he is alive, in remission and inspiring others through his TikTok and IG and leads a support group for cancer survivors.
Lauren Dunlap is Executive Director and Co-Founder for AAIDA in Charlotte N.C, and is also a rare disease patient. Lauren has over 13 years experience in advocating for and educating patients living with immune disorders and overlapping conditions. In addition, she has been a go-to resource for healthcare providers for many years, by offering valuable insights and education regarding barriers to patient care, treatment and outcomes. To expand her advocacy efforts, Lauren become a board-certified Prior Authorization Certified Specialist (PACS) with the Accreditation Council of Medical Affairs in 2020. She felt this was vital to help patients better understand and navigate the prior authorization process
Following their presentation Rob, Michael and Lauren will conduct a live Q&A session with attendees. This webinar will be made available on the AAIDA and UA websites and YouTube channels for our community.