The Marfan Foundation continues to lead the way in reimagining its programs and services for the upcoming months, and perhaps well into 2021. As you know, we are in unprecedented times and have had to pause events, programs, and services that are conducted in-person.
However, we are excited about the array of upcoming programs this year and into 2021. You’ll see some familiar services and new offerings as we continue to seek ways to provide both medical and quality of life information, and support, in this virtual world.
Virtual Support Groups
Our popular virtual support groups continue with Jan Lynch, MSN, RN, Director of our Help & Resource Center, and Andrea Friedman, MSW, who is working with us several hours a week, leading the groups.
Small-group sessions are offered for those newly diagnosed and seeking diagnosis; pain management; people who are age 50 and over; and more. Details are on our website.
There are also specific groups related to VEDS through The VEDS Movement. Katie Wright, director of The VEDS Movement, is part of the team that leads the VEDS support groups.
Quality of Life
We know that living with a connective tissue condition can be complicated. Our quality of life initiative, supported by experts in the field, has exciting plans for the Fall and Winter, with a focus on dealing with life with Marfan, LDS, and VEDS, how to talk to your children about their diagnosis, how to talk to doctors, physical activity, grief and loss, and more.
You can now register for Life after Aortic Surgery, a free webinar that features a panel of community members – two with Marfan and two with LDS – who have had aortic surgery, along with Dr. David Liang, Stanford Medicine and Hoag Hospital. The community members will share their experiences after aortic surgery and answer your questions. Dr. Liang will provide the medical perspective. This event is free, but you must register here. Watch for a combination of articles and webinars that address quality of life topics in the coming months.
Teen Talk and Teen Game Night continue this Fall. Teen group leaders Peter Donato (volunteer) and Dominga Noe (staff liaison) host a virtual game night for teens, ages 13-18, once a month, and a teen chat once a month. It’s a great way for teens with Marfan, LDS, VEDS, and other related conditions to talk about life, laugh, and everything in between. Teens interested in either option (or both) should connect with Dominga.
Medical Information for You
Our robust medical education webinar series got underway again last month, with a presentation on headaches and migraines given by Dr. Addie Peretz, Stanford Medicine. (The recording of this webinar and all previous medical webinars are available here.)
On November 19, Dr. Kim Eagle, chair of the GenTAC Alliance, and Dr. Josephine Grima, our chief science officer, will share select research about genetically triggered aortic aneurysm conditions that was presented at the GenTAC Aortic Summit last month (register here). Other upcoming medical webinars include a presentation on lens surgery given by Dr. Rachel Kuchtey, Vanderbilt, on January 19 (you can register now). And, in February, we will have a full series on aortic surgeries presented by leading surgeons across the country, including Dr. Eric Roselli, Cleveland Clinic, and Dr. Thor Sundt and Dr. Duke Cameron, of Massachusetts General Hospital. We will let you know as soon as registration opens.
As the pandemic continues, so do our COVID-specific programs and services. Our support groups on COVID-related stress continue on Monday nights. Anyone in our community is welcome to join; register here. In addition, we will have a webinar in January on the latest on COVID in conjunction with aortic disease. Dr. Kim Eagle, chair of the GenTAC Alliance and a Marfan Foundation Advisor, and other leading researchers, will share the latest insights from studies around the world. The GenTAC Alliance is now powered by The Marfan Foundation.
Connecting with community is critical when you are dealing with an uncommon condition. Our Walk for Victory program, which was put on pause by COVID, is coming back in the Spring of 2021 in 26 cities across the country, and we will again have a virtual global Walk. These events are more about meeting our warm and welcoming community than they are about walking! We have plans in place that meet the safety guidelines required because of COVID. You can start your teams now and gear up for earning awesome new incentive prizes. Check out the 2021 schedule and get started here.
If you’d like to connect with others through volunteering with the Foundation, we offer several opportunities during this time. Join the social media team, become a legislative ambassador, join the writing team, and more. Learn about our volunteer teams on our website. We would love to have you!
If you have any questions about our programs, feel free to email Eileen Masciale, Chief Program Officer, at email@example.com. Remember, we are always here for you!
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.