Matters of Heart: November 2020
Our Journey of Hope Continues on Giving Tuesday
Fifteen years ago Loeys-Dietz Syndrome got its name and friends like Courtney got the answers they needed to live a happy and successful life.
"Since 2005, my care has been coordinated with the recommended annual screening and interventions... Although 2020 may be filled with its challenges, let's remember to celebrate as well. Celebrate the discovery of LDS and continue supporting the ground-breaking and necessary work of the LDSF." says Courtney.
This Giving Tuesday, December 1, we will be celebrating our past and lifting up our future on this Journey of Hope. As we look into the coming year and beyond, we are focused on two key objectives: identifying and educating the medical community and expanding education and connection for our community.
Join us in celebrating our 15-year Journey of Hope on Giving Tuesday (or before)!
New: Personal Perspectives Webinar Series
In December, we are launching a new webinar series, Personal Perspectives. The first webinar, December 10, 7 pm ET, focuses on Life After Aortic Surgery and features two young adults with Marfan and two young adults with Loeys-Dietz – all who have had aortic surgery. Dr. David Liang, Stanford Medicine and Hoag Hospital, provides the medical perspective.
This panel discussion will surely be enlightening for the many people in our community who face aortic surgery at some point in the future. Register here (it’s free).
Research Webinar for You
The GenTAC Alliance, which is now powered by The Marfan Foundation, held the GenTAC Aortic Summit 2020, a scientific meeting on genetically triggered aortic aneurysm conditions, last month. Dr. Kim Eagle, GenTAC Chair, and Dr. Josephine Grima, the Foundation’s Chief Science Officer, will share highlights of this meeting in a free webinar on November 19, 7 pm ET. This is a great opportunity for our community to learn about the latest advances in basic science, diagnosis, and treatment that result from research done all over the world. Register here.
Support for Individuals and Families
As a way to stay connected while we have to be apart, we have started hosting LDS Chat Groups on Zoom. These informal discussions are led by LDSF Strategic Advisory Board members as a way to share lived experience and support. The next LDS Chat is for Young Adults and will be hosted by Lauren Atherton and Peter Donato on Thursday, December 3, at 7 pm ET. More chat groups will be created soon - keep an eye on our social media channels for announcements.
Also, through our partnership with The Marfan Foundation, there are an array of virtual support groups for our community, under the guidance of Jan Lynch, MSN, RN, director of our Help & Resource Center and Andrea Friedman, MSW.
Would you prefer to make an individual connection with someone who has the same diagnosis as you do or has already dealt with the same surgery you are facing? Through our mentor program, we can match you with the right person. Details are here.
Together we can heal hearts and inspire hope!
The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to the Loeys-Dietz Syndrome Foundation are tax-deductible and directly support our shared mission.