Know the Signs, Fight for Victory

Foundation Expands Mental Health Resources

The Foundation has launched a new Mental Health section on its website as part of a plan to highlight mental health concerns and encourage members of the community to take personal action. The launch coincides with Mental Health Awareness Month in May.

The expanded mental health webpage was possible due to generous funding from Scott and Kristen Griebel, whose son has Marfan syndrome.

The new webpage gives the Marfan, Loeys-Dietz, VEDS, and related conditions communities easier access to the Foundation’s existing mental health content and resources. Plans are also underway to expand the mental health content and update it on an ongoing basis. The mental health-related content is organized into topic-specific sections, including common challenges such as anxiety, depression, grief & loss, and body image. Other sections include targeted stages of life, finding help and support, getting connected, and various mental health resources. 

“Mental health is a critical part of overall wellness, and we’re thrilled to be bringing it more to the forefront,” said Dawn Reiner, chair of the Foundation’s Mental Health Task Force and board member. “This webpage is just one of the many initiatives we are implementing to address the mental health of our community. By making it a greater focus, we hope to destigmatize some of these common issues and raise awareness while helping members of our community realize they’re not alone and empower them to seek help.”

The Foundation has always recognized the need to address the mental health concerns and needs of the community, in addition to physical health, and continues to do so through webinars, support groups, conference workshops, blogs, social media, and online content. This webpage enables the Foundation to highlight these efforts and make it more easily accessible to those who need it.   

To view the new webpage and access mental health resources, visit the link here.

Community members share the positive impacts of taking action to improve their mental well-being:

“Mental health providers have helped me sort out my fears and wants in ways even close family and friends could not. They gave me tools and ideas for managing my stress and often gave me encouragement. I know I’ve lived a longer, better, deeper life because I learned to work on my mental health as diligently as I did my physical health.” Chris Heaney, NC

“After many years, I came to realize that treating the physiological challenges posed by Marfan syndrome is not the same as confronting the inevitable psychological burden of the disease. Don’t go it alone. Seeking out support and/or professional help can be transformative in ways you cannot imagine.” Raymond Chevallier, PA

“After my daughter Cassie was diagnosed at birth with Marfan syndrome, our lives became a whirlwind. I ignored my own mental health to the detriment of not only me but also my whole family. I needed to make sure I had a place to talk about my worries and fears, as well as our triumphs, and I’ve made sure to see my therapist ever since (on and off for years). Making sure that everyone in my family is getting the support they need is one of the best ways I know for us to take care of ourselves.” Alix McLean Jennings, NJ

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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.

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