The Marfan Foundation, in association with Stanford Health Care and Kaiser Permanente, will hold its 34th Annual Conference in Santa Clara on July 12-15, bringing together more than 600 individuals and families with Marfan syndrome and related disorders from all over the country and from all over the world. 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.
“We are grateful to Stanford Health Care and Kaiser Permanente for making it possible to bring our Annual Conference back to the West Coast. Stanford is celebrating the 30th anniversary of its Marfan clinic and is truly one of the leaders in the country for these patients. Kaiser Permanente provides another opportunity for Marfan and related disorders patients in the Kaiser system in Northern California to receive quality care,” said Michael Weamer, President & CEO, The Marfan Foundation. “How fortunate are the individuals and families in our community to have two topnotch programs on Marfan and related disorders host this conference. The educational programs led by local and national medical experts and social activities throughout the weekend are life-changing.”
“The Foundation’s Annual Conference is the best place to get information about Marfan syndrome and related disorders, and that’s always a priority, especially for first-time attendees,” said Stephanie Cooper-Noe, president of the Foundation’s Northern California Chapter whose husband, David, and two daughters, Dominga and Samantha, have Marfan. “Over the years, it’s become the place where I go to reconnect with friends and talk about what it means to have Marfan or a related disorder or be the parent or spouse of someone who is affected. It’s truly special to be with people who know what it’s like to deal with the challenges we face, share our highs and lows, and get the support of people I have grown to love and admire within the community.”
Conference has Diverse Offerings
The conference begins with a patient health fair on July 12-13, when people who have a diagnosis or suspect that they have Marfan syndrome or a related connective tissue disorder have an opportunity to have individualized discussions regarding their condition with medical experts (by appointment only).
General conference sessions are on July 14, with medical presentations and a panel discussion led by researchers and physicians who have special expertise in Marfan syndrome and related disorders. They will address a range of medical topics, including what’s new in the understanding of Marfan syndrome, aortic surgery, and how to protect the bones in Marfan, as well as mindfulness for pain relief.
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, July 15, with more of a focus on quality of life issues and coping strategies for different age groups. This year, the conference offers a number of new workshops on topics that include pain and medications, cerebral spinal fluid leaks, and sleep apnea, as well as nutrition for children, guided imagery for pain and stress, headaches, and chiropractic practices.
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.
Creating connections is a focus throughout the conference. Two events are specifically geared to fun and friendship: our Victory Celebration Party on Friday, July 13, and our Creating Connections Luncheon on Saturday, July 14. The Victory Celebration Party 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.
Complete conference details are available at Marfan.org/Conference.
Marfan Syndrome and The Marfan Foundation
Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. It affects the heart and blood vessels, the bones and the eyes. Knowing the signs is the key to early and accurate diagnosis and life-saving treatment.
The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. It works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.
Learn more and get involved at www.marfan.org.
Stanford Health Care’s Center for Marfan Syndrome and Related Aortic Disorders
Stanford Health Care’s Center for Marfan Syndrome and Related Aortic Disorders, established in 1988, is the largest of its kind in California and among the nation’s leading centers for the diagnosis and treatment of Marfan syndrome. The central mission of the center has always been to be an integrated, multidisciplinary unit that provides comprehensive, cost-effective, state-of-the-art diagnostic evaluation and care for adult and pediatric patients with Marfan syndrome and aortic disorders. The center brings together Marfan syndrome specialists in treating aortic disorders to ensure every patient receives a comprehensive diagnostic review and personalized treatment plan.
Kaiser Permanente’s Center for Thoracic Aortic Disease
Kaiser Permanente has a long history of treating patients with Marfan syndrome using a multidisicplinary approach, and recently opened a Center for Patients with Thoracic Aortic Disease, which provides a comprehenisve care model and opportunity for Marfan and related disorders patients within Kaiser Permanente Northern California’s large, integrated delivery system to receive personalized, high-quality care with dedicated aortic disease specialists. Kaiser Permanente is a national leader in providing high-quality primary and specialty care, and is excited to partner with The Marfan Foundation to further improve care for this important patient population.
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.