Join us for this uplifting panel discussion led by the Two Disabled Dudes - two incredible motivational speakers, Kyle and Sean, who are also in the rare disease community. They are known for their insightful, authentic, and humorous conversations about living beyond our circumstances, no matter what those may be.; The panel features four members of our Marfan, LDS, and VEDS community, who will share their insights and perspectives and talk about living beyond their circumstances. A half hour will be dedicated to questions from participants.
Show off your pet! Join us for games and contests to give your pet the screen time they crave! Grab your favorite furry friend and let's go on a doggy date! Enjoy show and tell with your animal pals, play dress up, and let their fur balls get some face-time with other pets. Your favorite stuffed animal will work too. This activity is simply paw-fect, darling!
Share your concerns with other parents of children with neonatal Marfan syndrome. Please note: Participation is limited to parents of those with neonatal Marfan syndrome.
Nate Massari and Topher Brooke, with Aytu BioPharma, along with Hal Dietz, MD, will provide a brief background on the research leading up to the upcoming clinical trial for AR101 (Enzastaurin) for VEDS, and answer questions about steps in planning the trial and possible timeline.