Connective Issues Fall 2024

ACAR WITH A CAUSE A health scare led Dan Sperry on a journey that would change his life forever. After experiencing an abdominal aortic aneurysm in 2019, he was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS). “While researching how to live withVEDS,IlearnedaboutTheVEDS Movement, and the information I found was instrumental,” said Dan. “I’ve been connected since 2020, and now I’m on the steering committee. Each year, I try to raise money for The VEDS Movement to help further its mission.” One way Dan has helped spread awareness about rare conditions like VEDS is through his Chalkbird car, a 1985 Firebird turned chalkboard on wheels. The journey to the Chalkbird began almost by accident. After his diagnosis, Dan realized he wanted to ful fi ll a lifelong dream of restoring a project car, which led him to a 1985 Firebird that needed signi fi cant restoration. However, as he worked on the car, the challenges of perfecting its bodywork became apparent. “Anyone who restores cars knows you can hide a lot under body fi ller and paint,” said Dan. “The more work I did to get the body nice, the more issues I found.” One day, his son’s bike fell into the car, scratching it down to the bare metal. With no other options, Dan grabbed a can of chalkboard spray paint, and the Chalkbird was born. What began

INTERNATIONAL SYMPOSIA Educated and Empowered Our Community In August 2024, we partnered with like minded organizations in the Nordic countries and in the United Kingdom to hold international symposiums in Oslo and London, advancing globally the Foundation’s mission to save and improve lives while creating communities “As a patient, I think this was the most em powering meeting I have been to in my 59 years living with Marfan syndrome,” said Gareth Owens of Great Britain, about the International Sympo sium in London. Owens is the global leader of the Think Aorta awareness campaign. In Oslo, more than 100 attendees – watching via livestream or in-person – viewed presentations by experts from both the US and Norway – covering topics including exercise, ongoing medical care, medications, aortic surgery, and more. In London, more than 200 people who live with Marfan, Loeys-Dietz, and VEDS attended a full day of presentations and breakout sessions that covered a variety of medical topics, self-advocacy, and considerations for living with a genetic aortic or vascular condition. Beyond the valuable medical information, attendees bene fi ted from new connections – with the doctors and with one another. Many had never met another person with the same condition, demonstrating the power of these events. “Thank you for coming to Norway. For the fi rst time I got to meet another person with the same diagnosis - in real life!”

asasimple fi x evolved into a unique project. Dan decided to transform the car into something that could engage and educate others. “Rather than spending all this time and money trying to get the car perfect, I switched directions,” he says. “I wanted to bring interest in cars back to kids, get them working with their hands, and allow them to show their creativity using the car as a canvas.”

 Dan and his son DJ

Now, the Chalkbird has two missions. First, it encourages young people to take an interest in cars, mechanics, and trades. Second, it raises awareness for the rare disease community, particularly those a ff ected by VEDS, Marfan syndrome, and Loeys-Dietz syndrome. Through his nonpro fi t, Dan uses the Chalkbird to support families impacted by rare diseases, raising funds for organizations like The VEDS Movement. “This project has been so important to me for so many reasons,” Dan shared. “It connects my son and me—my son also has VEDS. I also get to speak to hundreds of people a week, and it amazes me how many have a family history of aortic aneurysms or dissections and don’t understand the genetics involved.” Primarily at car shows, the Chalkbird is also well-known in northern New Jersey. People from the area can request the car at their event or party. For Dan, the Chalkbird is more than just a car; it’s a symbol of connection and hope. “The smiles on people’s faces when they interact with the car are astonishing,” he said. “Knowing that the car may have made someone’s day or even helped someone get a proper diagnosis is what makes it all worth it.”

The Oslo presentations were recorded and are on our YouTube Channel. Be sure to subscribe to receive alerts when new videos are posted.

Upcoming Educational Events Register at Marfan.org/calendar • November 2 – New England Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS • November 9 – New Jersey Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS • January 25 –4 th Annual Spanish-Language Summit on Marfan, Loeys-Dietz, and VEDS (virtual)

10

Marfan.org