A diagnosis of NF can be both overwhelming and distressing regardless of whether it is expected or not. No matter where you find yourselves along the spectrum, a diagnosis of NF will have an impact on you, so, it is very important to know that you are not alone.
Being able to talk to someone else who has walked in your shoes can greatly lessen the experience of isolation and distress, improving a person’s overall mental health and ability to cope with what comes next.
In June, we launched the first phase of a new pilot Peer Leader Program. This exciting initiative was originally designed to establish local Community Support Groups (CSGs) that would ensure anyone impacted by NF could connect with trained peer leaders with a lived experience of the condition.
However, given the current environment, the Support Services Team modified the program to become a national telephone-based service. A group of volunteers have been carefully selected and comprises individuals with experience in NF1, NF2 and Schwannomatosis.
They are working alongside our National Support Coordinator, Meredith, to complete a “Peers Supporting Peers” training package and will be available to connect with community members by September.
The training consists of online modules and video teleconferencing encompassing listening skills, empathy, conflict resolution, confidentiality, self-care and mental health awareness, as well as dealing with people in crisis.
Peer support enables people to share helpful resources and strategies around how to manage the condition and empower those diagnosed and their families. It also offers a forum for forming new friendships and networks.
The program was developed in conjunction with Amanda Spillare Social Work Services, the CTF staff and community members.
If you would like to speak with one of our Peer Leaders, please contact the CTF Support Services Team by phone or email. If you would like to volunteer or nominate someone for the next round of training, please also contact us to register your interest.