Connective Issues Spring 2023

Following the General Session, attendees can choose from30di ff erent small group workshops presented by medical experts on topics such as medical management, cardiac surgery, orthopedic issues, pain management, aging with a connective tissue condition, and many more. Sunday workshops, which are led by community members and medical professionals, will focus on mental health and provide 30 di ff erent workshops options. (See mental health grant sidebar). Children & Teen Programming Wealsoo ff er special programming for children and teens. Children ages 5-12 will have fun participating in an onsite camp experience run by our partner, Camp Joy, and adapted for the Conference setting. Children will enjoy group meals, icebreakers, and fun activities including games, crafts, science, and more. Teens will have a group dinner, a Q&A breakfast with medical professionals, and a local field trip. They can attend small-group workshops just for teens that promote positive mental health and wellness. All children and teen activities encourage bonding, provide medical education, and build self-esteem to complete a well rounded Conference experience. Social Events In addition to the educational sessions, Conference o ff ers a variety of social events and activities to promote camaraderie and fun. There will be a welcome dinner and awards ceremony, Creating Connections luncheon, and Victory Party. These activities provide opportunities for participants to connect with each “Being able to meet others who are a ff ected face to-face and being able to get and share practical health and life advice is invaluable. It’s the most life-changing thing I’ve ever experienced.”

Foundation Receives 2023 Mental Health Impact Grant The Marfan Foundation received a grant from Global Genes to support mental health programming and initiatives at the 39 th Conference. This is the first time Global Genes has o ff ered RARE Mental Health Impact Grants, designed to improve the health and mental well being of the communities served. The Foundation is one of 12 recipients out of 130 applicants. This grant support will enable the Foundation to provide the 400+ Conference participants a better understanding of the need to focus on mental health in addition to physical health, gain increased knowledge about mental health-related topics, and learn about tools and resources available. While mental health content will be incorporated into many workshops throughout the event, an entire day will be dedicated to discussing mental health challenges with 30 workshops and sessions on a variety of topics designed to raise awareness, educate, and provide the tools and resources for people to take action. The workshops feature outside experts with special expertise in mental health and chronic health conditions. Sessions will address such topics as coping with trauma and surgeries, stress and heart disease, recognizing signs of mental health issues, and getting help. A number of facilitated support groups will also be held for targeted audiences including moms, dads, and partners and spouses, and they will include topics like grief and loss and self-care. “I loved being able to have the time to learn and engage in all the di ff erent topics while knowing my kids were being well taken care of. I feel this was the best experience I have had and loved learning as much as I could.”

other on a personal level and build relationships that can last a lifetime. WATCH A VIDEO  from our co-hosts and medical partners


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