Recorded – The Marfan Foundation

Two Disabled Dudes: Living Beyond Your Circumstances

July 11, 2020

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.

VEDS Upcoming Clinical Trial Q&A with Aytu BioPharma and Hal Dietz, MD (AR101- Enzastuarin)

July 11, 2020

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.

Thinking of Having Children

July 11, 2020

Learn about the options for family planning and hear real world experiences from couples with Marfan syndrome who have had children naturally, by adoption, through IVF, and using a surrogate. Ask your questions and get answers from a medical expert and people in our community.

Treatment of Non-Aortic Aneurysms: Q & A

July 11, 2020

Aneurysms are most often observed in the aortic root, but can occur in other arteries throughout the body, especially in those affected by Loeys-Dietz syndrome and VEDS. Here is an opportunity to learn what you need to know about non-aortic aneurysms and get your questions answered.