The Marfan Foundation is hosting a virtual group for Teens ages 13-18 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 Teen Talk will include open conversation and connection on various appropriate topics and will be led by our staff member, Dominga Noe and our volunteer leader Peter Donato. This group is not designed to offer therapy or counseling, but rather an opportunity to speak on the highs and lows of living with chronic conditions and be more connected with others in the same age group.
Each group will run for approximately 90 minutes and will be held from 7:30-9:00 pm ET on the third Monday of each month, beginning in February 2021 (Feb. 18th). The group will be held on Zoom. It is expected that teens join on camera and participate for the duration of the group. Pre-registration and parental/guardian consent for the group is required.
Acknowledgements and Agreements
I hereby consent to have my child participate in an online social group, Teen Talk, provided by The Marfan Foundation. I acknowledge and understand the following:
1. That the purpose of this group is to offer social connections for individuals ages 13-18 who have a diagnosis of Marfan syndrome, VEDS, Loeys-Dietz syndrome or a related genetic aortic or vascular condition.
2. That 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.
3. That 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.
4. That family members or friends who are not group members may not participate.
5. That 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. I understand that my child's personal information shall be stored in a database or secure databank and information shall be limited to the Foundation's staff, employees, or the management. I hereby give my consent for my child's participation in the online activities conducted and organized by The Marfan Foundation.
The information shall also be used for the activity for online sessions as well as for grant of access to activities that shall be provided online by The Marfan Foundation.
I hereby give my permission for my child to participate in an online activity in a platform preferred by The Marfan Foundation
By affirming my consent for my child to participate in an online session, I understand that no derogatory, obscene, or any form of racism shall be allowed in class.
I understand that these sessions may be photographed for the purpose of archive or promotional purposes. In this regard, I give my consent for my child's participation to be included in the promotion of The Marfan Foundation.