Know the Signs, Fight for Victory

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August 2022

Camp Victory for Kids – Ohio

Camp Victory for Kids offers children and teens, ages 7 to 18, an opportunity to have an independent camp experience. Children participate in all camp activities, such as lake swimming, boating, archery, arts and crafts, dances, campfires, and much more in a safe environment using only therapeutic and adaptive equipment. ...
07 - 12 Aug
All Day
Camp Joy
10117 Old 3C Highway, Clarksville, OH 45113

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. ...
09 Aug
6:00 pm - 7:00 pm
Virtual

LDS Connect

If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day. ...
11 Aug
7:00 pm - 8:00 pm
Virtual

Teens Together: A Night to Chat

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 for a talk with other teens they can relate to. ...
15 Aug
7:30 pm - 9:00 pm
Zoom

Coping with COVID Stress

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. ...
15 Aug
8:00 pm - 9:00 pm
Virtual

Kids Club

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. ...
16 Aug
7:00 pm
Virtual
hands on a laptop with a stethoscope next to it

Newly Diagnosed & Those Seeking Diagnosis

Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you. ...
18 Aug
5:00 pm - 6:00 pm
Virtual

Marfan Connection (50+) Support

Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you. ...
19 Aug
3:00 pm
Virtual

VEDS Partners and Spouses

This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences. ...
23 Aug
6:00 pm
Virtual

VEDS Parents

If you are a parent of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center, and Abby DeLong, VEDS parent and patient advocate. ...
24 Aug
8:00 pm
Virtual

Pain Management

Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you. ...
25 Aug
7:00 pm
Virtual
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