In recognition of the significant contributions of volunteers throughout the country, The Marfan Foundation presented several awards at the 32nd Annual Conference. More than 600 people living with Marfan and related disorders, as well as the leading medical experts in the field, were on-hand at the Foundation’s conference to applaud those who were honored for their exceptional efforts.
“The Marfan Foundation is driven by the thousands of volunteers across the country who bring the local community together, conduct local awareness events, and initiate local projects that raise funds for programs and services that enhance of lives of people with Marfan and related disorders,” said Michael Weamer, President and CEO, The Marfan Foundation. “While awards are given out at the conference, we appreciate every single volunteer effort that supports our community. Volunteers are truly the life blood of the Marfan Foundation.”
The honorees were:
Antoine Marfan Award: Dr. David Liang, a member of the Foundation’s Professional Advisory Board who takes care of patients at the esteemed Marfan Syndrome and Related Aortic Disorders Clinic at Stanford University. In addition to being a brilliant clinician and researcher, Dr. Liang is fully entrenched in the Marfan community as a friend and participant with the Northern California Chapter of The Marfan Foundation.
His patients expressed their gratitude:
Priscilla Ciccariello Award: Dr. Alan Braverman, the chair of the Foundation’s Professional Advisory Board and the director of the Marfan Clinic at Washington University in St Louis, and his wife, Rebecca, and children, Emily and Jenny, for their long-time commitment to the Marfan syndrome and related disorders community. Dr. Braverman and his wife, Rebecca, are the guiding force of Heartworks St. Louis, which has raised hundreds of thousands of dollars for the Foundation. With their daughters, they are also involved in the local community group activities, including the St. Louis Walk for Victory. This is above and beyond the extraordinary patient care that Dr. Braverman provides his patients. Here is what they have to say:
Rising Star Award: Owen Gray, 15, of Houston, who has raised public awareness of Marfan syndrome through national and local television interviews, advocated on behalf of the Marfan and related disorders community on Capitol Hill, and served as the Youth Chair of the Foundation’s Houston Walk for Victory, which raised more than $135,000.
Heart of the Matter Award: Isaiah Austin, the former Baylor University basketball start who had to withdraw from the NBA draft in 2014 due to the Marfan syndrome diagnosis. In the past year, Isaiah has continued his commitment to the Marfan community through advocacy on Capitol Hill, interviews about Marfan in a range of media, and support of the Foundation’s Walk for Victory program as National Walk Ambassador.
Cheryll Gasner Spirit of Service Award: Tim Joyce, volunteer photographer for the Foundation for more than 15 years. Karen Murray, Chair of the Foundation’s Board of Directors, said, “Tim a photographer with enormous talent, vision and generosity who has provided a window and perspective into those challenged by Marfan syndrome as well as those who support them. His gentle nature and keen eye enables him to capture meaningful moments that are the true mark of a humanitarian and a great artist.
Cheryll Gasner Spirit of Service Award: Libby Sparks, APNG, Johns Hopkins Hospital, for her outstanding direct patient care and compassion and devotion to the Marfan Community. Here are comments from Hal Dietz, MD, Johns Hopkins, who made the award presentation.
The Foundation honored many other members of the Marfan and related disorders community for their successes in the areas of education, awareness, and fundraising. The awards were presented at the conference to those who were in attendance. Here is the complete list of individuals, group leaders, and Walk for Victory and marathon fundraisers.
Alix McLean Jennings
Chapter/Community Group Leaders
Rob Berklite, Mid-Atlantic Chapter
Jennifer Reisinger and her daughter, Kelsey, Tidewaters Community Group
Jon Rodis, Massachusetts Chapter
Brandi Smith, Nashville Community Group
Walk for Victory – Top Fundraiser for each Walk for Victory and Top Marathon Fundraiser
Atlanta: Becky Gunn
Boston: Suzy Chaos
Houston: Tyrelle Robert
Pasadena: Kaitlin Mattice
St. Louis: Gail Johnson
Scottsdale, AZ: Paula Bower
Tri-State, NY: Michael Kramer
Trussville, AL: Amber Harbison
2015 TCS NYC Marathon: Jamie Grant
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.