Connect Issues Fall 2020

It is vital to educate our lawmakers about Marfan, Loeys-Dietz, VEDS, and other genetic aortic conditions and then advocate for laws and programs that address the needs of our community. Among the issues that are important to us are research funding, sensible opioid laws, and healthcare. The most effective way to get our message across is through the voice of our community members. Whether your lawmakers are in the middle of their term or are new to office, they want to hear about issues that are important to you, their constituent. To learn more about our legislative ambassador program, please visit Marfan.org/volunteer . You can also get involved in our legislative efforts by texting MARFAN, LDS, or VEDS to 52886 (text the word that matches your connection to the Foundation). t Grace Meyers, 17, of Michigan, shared her Marfan story with the aide for Michigan’s Senator Gary Peters on the Foundation’s Hill Day in February 2020. This year’s legislative efforts will be virtual. TAKE LEGISLATIVE ACTION

GENTAC ALLIANCE JOINS THE FOUNDATION

As of October 1, The Marfan Foundation is powering the GenTAC Alliance, the community of stakeholders committed to advancing the understanding of genetically induced thoracic aortic diseases and their treatment. The GenTAC Alliance was initiated in 2017 to har- ness the synergy and collaborations created by the GenTAC Registry (the National Registry of Genetical- ly Triggered Thoracic Aortic Aneurysms and Related Cardiovascular Conditions), which was funded by NHLBI and NIAMS, and enrolled and followed over 3600 patients from 2006 through 2016. “The Foundation has been an extraordinarily im- portant partner and supporter of the GenTAC Regis- try and, subsequently, the GenTAC Alliance over the past 14 years. In fact, the Foundation’s influence in promoting more investment in the science surround- ing genetic aortic conditions was at the heart of the GenTAC Registry’s creation by the National Institutes of Health in 2006,” said Kim Eagle, MD, Director, Frankel Cardiovascular Center, University of Michi- gan, and Chair of the GenTAC Alliance. “How fitting it is now for the GenTAC Alliance to come ‘home’ to become part of the rapidly expanding global vision of The Marfan Foundation as together we seek to improve human health surrounding the many types of genetic aortic disorders.” The goals of the GenTAC Alliance include enhanc- ing the scope of research and expanding collabora- tions to improve clinical management of genetically induced thoracic aortic diseases; facilitating effective

coordination of the scientific efforts among stake- holders; expanding partnerships to improve the diag- nosis and treatment of genetically induced thoracic aortic diseases; promoting the use and sharing of the resources (data, specimens and images) created by GenTAC and related registries; and identifying and tapping new resources to support grant oppor- tunities for research on genetically induced thoracic aortic diseases. “The goals of the GenTAC Alliance align with those of The Marfan Foundation as we work to expand our focus on not only improving the lives of those with Marfan, Loeys-Dietz, and VEDS, but also others with aortic disease caused by genetic factors,” said Cory Eaves, Chair of the Foundation’s Board of Directors. “The Foundation has collaborated with Dr. Eagle on the GenTAC Registry since its inception and looks forward to increasing the impact of research as the Alliance becomes part of our organization.” In early October, the Foundation and the GenTAC Alliance held the GenTAC Aortic Summit 2020, an online medical meeting which attracted more than 225 scientists and clinicians from all over the world. Highlights of this meeting will be shared with our entire community.

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