The Marfan Foundation to Honor Austin Carlile
The Marfan Foundation will honor Austin Carlile, former lead singer of the band Of Mice & Men, with the Heart of the Matter Award, at its 33rd Annual Conference in Atlanta. The award will be presented at the August 4 awards dinner at the Marriott Buckhead.
Carlile, who was diagnosed with Marfan syndrome after his mother died from the condition, had to withdraw from Of Mice & Men at the end of 2016 due to ongoing medical problems. In the past several years, he has been outspoken about Marfan syndrome and his journey, raising extensive public awareness. He included teens with Marfan syndrome in one of his last music videos, Real, which was released in September 2016.
“Austin is a beacon of hope for the Marfan and related disorders community, especially the teens and young adults who have watched as he pursued his career and, ultimately, had to change direction because of his condition,” says Maya Brown-Zimmerman, a member of the Foundation’s Board of Directors who experienced first-hand the challenges of growing up with Marfan syndrome. “Despite Austin’s medical struggles, he has embraced this community and has used his celebrity to raise the profile of Marfan and related disorders so that others can get diagnosed early. We are thrilled to have this opportunity to honor him.”
Raising awareness of Marfan syndrome is important to Carlile because he knows firsthand that the condition can be deadly if not diagnosed and treated. His mom had not been diagnosed before her aortic dissection, which took her life when Carlile was only 17 years old. When doctors realized that the cause of the dissection was Marfan syndrome, Austin was evaluated and, subsequently, diagnosed. He had aortic surgery in 2010 to prevent the same tragedy that struck his mother.
“I'm honored to receive this award from The Marfan Foundation just as I am honored to be a part of the community that makes up who we are. The tall, the thin, even short and stout... each of us has this one thing that binds us together, a common thread of daily suffering that some of us find ourselves in, and also the common thread through which we can care for, share and empathize with, and understand each other. So few really understand what it's like to walk a day in the shoes of someone battling a chronic illness,” said Carlile. “I have never met a stronger ‘we’ in my life than us, the Marfan community. I look forward to seeing everyone in Atlanta.”
Carlile will also be on-hand for the Foundation’s Conference Walk for Victory, where he will cut the ribbon to kick off the Walk. The Conference Walk for Victory, which will be held at Chastain Park on the afternoon of August 4, is part of the Foundation’s national Walk for Victory program, which is held in cities across the country throughout the year to heighten awareness of Marfan and related disorders and raise funds for the Foundation’s life-saving programs and services. This year, the Walk for Victory program has raised nearly $500,000 for the Foundation.
More About the Annual Conference
More than 600 individuals and families with Marfan syndrome and related disorders from all over the country and from all over the world will be on-hand at the conference, which is being held in association with Children’s Healthcare of Atlanta, Sibley Heart Center Cardiology, and Emory Heart & Vascular Center. The conference gives attendees an opportunity to meet leading Marfan syndrome physicians and scientists as well as hear about new medical and genetic research firsthand. Participants will also learn strategies for improving their quality of life and have numerous opportunities to network with other people who are also living with Marfan and related disorders.
The conference begins with a patient health fair on August 3-4, when people who have a diagnosis or suspect that they have Marfan syndrome or a related connective tissue disorder can be evaluated by medical experts from all over the country (by appointment only).
General conference sessions are on August 5, with medical presentations and a panel discussion led by researchers and physicians who have special expertise in Marfan syndrome and related disorders. After the general session, conference attendees can attend small-group workshops about specific medical concerns that are led by physicians and other medical professionals. Workshops continue on Sunday with more of a focus on quality of life issues and coping strategies for different age groups.
The teen and children’s programs are bigger this year than ever. Fun, age-appropriate activities are planned for each group. However, the true value of the conference for the Foundation’s young members is related to their self-esteem, peer support, and opportunity to make friends with others who are also affected by Marfan and related disorders.
Complete conference details are available at Marfan.org/Conference.