Both Groups are looked after by our Youth Leader Volunteer, Sarah Norman.  She has passed an enhanced DBS screen (AKA police check) and receives training and support from AMEND.

Sarah is not a full-time volunteer and can only respond when she is available to do so.  This is one of the reasons why the Groups are NOT an emergency support resource (these can be found on our website: www.amend.org.uk/patients/young-adults/)

Sarah Norman

I was genetically tested and diagnosed in 2004 at the age of 10 when my Dad became seriously ill with MEN1.  Unfortunately we lost my Dad in 2010 due to mis/ late diagnosis and little support, due to the unknown at the time.  AMEND means an awful lot me and my family, offering support and advice. By being an active part of the groups I am constantly learning more about different types and symptoms from fellow members!  I have volunteered throughout my whole life with charities and have experienced the role of a Team leader with ‘Kid’s trips’ at University. I was also a Tots dance teacher and volunteered as a summer arts helper within my local dance school.  Being given the opportunity to support and help others with something so close to home and important to me not only fulfils my passion to give, but also helps me to accept and live with it myself!

If you have an MEN Syndrome and are aged under 30, chances are you can join!  However, there are a few safety measures first:

1. Young people must either be an AMEND member themselves (aged 18+) or must have a parent or guardian who is a member (when aged under 18)
2. Young people under 18 must have parental permission to join the WhatsApp Group. This should be submitted to AMEND CEO, Jo Grey (jo.grey@amend.org.uk) who will check membership status and confirm the permission.
3. By requesting to join a Group, the young person gives permission for their phone number to be shared with the Youth Leaders
4. You must have your own personal device that has WhatsApp installed (using a parents’ device is not permitted)

Your registration will be checked against our membership list before your contact details are forwarded to our Youth Leaders.

Our Groups are a supportive community for asking questions and sharing thoughts and experiences with peers living with a similar rare condition.  There are no parents or guardians in the Group because AMEND knows how important it can be to talk to people outside of your own family.  We ask that all joining members of the Groups recognise and sign up to the following rules:

1. Be kind
2. No use of derogatory language around race, gender, ability, etc
3. Neither the Group members nor the Leaders are qualified to offer emergency support. If you have urgent support need, please visit our website for suggestions of organisations that can help: amend.org.uk/patients/young-adults/
4. Do not share any images from or images of Group chats outside of the Group
5. What is said in the Group stays in the Group (unless a Leader feels that someone requires urgent intervention, at which point they will follow the relevant AMEND guidance)
6. When they reach the age of 18, members of the Group 1 will be join Group 2, being members of both groups for 1 ‘transition’ year before leaving Group 1
7. When they reach the age of 30, members will be removed from the older age Group.

The Youth Leader reserves the right to remove any member of either Group at any time for the following reasons:

1. Bullying or harassment of any kind
2. Use of derogatory language around race, gender and ability
3. Publicly sharing images from or images of Group chats outside of the Group
4. Sharing indecent images to the Group
5. Parental permission is withdrawn (in the case of under 18s)