Connect Issues Winter 2021

NEW MENTAL HEALTH PROGRAM IN 2021

It is our hope that, through this new program, the Foundation can destigmatize the need for mental health support and provide impactful programs, including a mechanism for accessing trained professionals, that will help the Marfan and related conditions community on their journey.”

Living your best life with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions requires more than taking care your medical needs. Your mental health is a critical component too. The Foundation’s Empowerment Webinar Series is one way we have been addressing these issues. Now, thanks to the generosity of wonderful friends, Scott and Kristen Griebel, the Foundation can make a bigger impact. Their gift of $100,000 will enable us to launch a multi-faceted comprehensive mental health program in 2021 that will change lives. Scott has Marfan syndrome, as does the couple’s teen-aged son, Jackson. “Medical care for people with Marfan and related conditions has come a long way in the last few decades with many tests, medications, and procedures at one’s disposal to maximize the chances for a long and productive life,” said Scott. “However, we have often felt that the mental well-being of affected people and their families has not been given enough attention. It is our hope that, through this new program, the Foundation can destigmatize the

need for mental health support and provide impactful programs, including a mechanism for accessing trained professionals, that will help the Marfan and related conditions community on their journey.” Mental health includes our emotional, psychological, and

social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make choices. Mental health is important at every stage of life, from childhood and adolescence through adulthood. Through a combination of outside experts and the experience of members of our community, we will provide valuable information, programs, and support to people with Marfan, LDS, and VEDS who are struggling with mental health issues. Among the topics that will be addressed are living with your diagnosis, coping with surgery, talking to your children about their diagnosis, depression, bullying survivor guilt, and more. “Now that I have become friends with many people with Marfan, it is clear to me that mental health reactions to having this syndrome can be as varied as the more often discussed physical effects,” said Kristen. “Scott and I are looking forward to seeing the new mental health offerings from the Foundation and making a difference in the community.” The Marfan Foundation extends its heartfelt thanks to Scott and Kristen for this generous gift. We are truly appreciative of their commitment to the Marfan and related conditions community.

p Scott and Kristen Griebel

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