Due to the nature of this program and the ages of the participants involved, additional consent waivers are needed to participant in this program. Zoom information will not be sent until a staff member has reviewed & confirmed participant eligibility and parent/guardian consent.
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The Marfan Foundation is hosting a
virtual 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 with others who have a similar diagnosis. The
Kids Club will include fun, age-appropriate games and activities, such as
Bingo, Would You Rather, Scavenger Hunt, and 5 Second Rule, and will be led by
our social worker, Andrea Friedman, MSW. This group is not designed to offer
therapy, counseling or advice, but rather an opportunity to have fun and be
more connected with others in the same age group.
Each group will run for approximately 60
minutes and will be held from 7:00-8:00 pm ET on the third Thursday of each
month, beginning in February 2021 (Feb. 18th). The group will be held on Zoom.
It is expected that children join on camera and participate for the duration of
the group. Pre-registration and parental/guardian consent for the group is
Acknowledgements and Agreements
I hereby consent to have my child participate in an online social group,
Kids Club, provided by The Marfan Foundation. I acknowledge and understand the
the purpose of this group is to offer social connections for individuals ages
9-12 who have a diagnosis of Marfan syndrome, VEDS, Loeys-Dietz syndrome or a
related genetic aortic or vascular condition.
this group is being provided via Zoom video conferencing. Although we have
group guidelines in place to create a safe and supportive virtual environment,
due to the nature of this technology, we cannot guarantee privacy of
participants. It is important that your child be in a private area when
participating and where your child will not be interrupted.
the following ground rules are important to create a safe and supportive
environment for everyone in the group: A) Show respect to others, B) Allow
others time to participate, and C) Freedom to choose whether to participate.
family members or friends who are not group members may not participate.
participants may be removed from the group if they do not follow the guidelines
and ground rules listed above.
Consent to Participation
By signing below and by having my child
participate in the virtual social group, I
acknowledge and agree to the terms and conditions set herein.