Know the Signs, Fight for Victory

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October 2025

Walk For Victory – Indianapolis

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that improve the lives of our community: […]
05 Oct
12:00 pm - 3:00 pm
Dillon Park
6001 Edenshall Lane, Noblesville, IN
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Teen Game Night

This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in the fun. We will be playing games using the Jackbox game series.
06 Oct
7:30 pm
Zoom
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(Rescheduled) Stickler Connect

In honor of those who observe Yom Kippur, we are changing the dates of the two support groups initially scheduled during the holiday. Please note the following date change: Stickler Connect has been moved to October 8, at the usual time. You are warmly invited to join our support group for individuals diagnosed with Stickler […]
08 Oct
8:00 pm - 9:00 pm
Zoom
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(Rescheduled) Marfan Connect

Are you diagnosed with Marfan syndrome or a related disorder? Are you between 30 and 50 years old? Would you like to connect with others living with Marfan syndrome and related disorders for support and to share resources and information? If so, this group is for you.
09 Oct
5:00 pm
Virtual
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LDS Connect

Please Note: Due to our scheduling conflicts with our Conference in Atlanta, this group will meet on Thursday July 3, 2025 at 7pm EST. (instead of Thursday July 10, 2025) If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about […]
09 Oct
7:00 pm - 8:00 pm
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A Time to Talk: Monday Matters!

Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
13 Oct
Virtual
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Coping with Grief and Loss

Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful.
14 Oct
6:00 pm - 7:00 pm
Virtual
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Living with Stickler Syndrome: Professional and Personal Perspectives

This webinar will highlight life with Stickler syndrome from clinical and lived experience viewpoints. Dr. Taran Youssefian Blakstvedt, a licensed clinical psychologist at the TRS National Resource Centre for Rare Disorders in Norway, will share preliminary findings from her ongoing research on quality of life in individuals with Stickler syndrome. In addition, three community members […]
15 Oct
1:00 pm - 2:00 pm
Zoom
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