NF Connect was born out of COVID-19, a solution that would enable community to stay connected even while apart. Connecting people with information and with each other is a vital part of our mission, so when our ability to host live events was no longer possible, we developed a new approach that would help meet this need in a different way.
With the support of the QBE Foundation we set up monthly Zoom chats for teens, young adults and adults living with NF, as well as parents and carers of children with NF.
Each group has its own unique dynamic, which can change from month-to-month depending on who is attending. The sessions ranged in size, with some becoming quite large, while others were a bit more intimate. But like most things, it is not the size that counts, but the quality of the conversation.
The NF connect session I was a part of made me realise that I’m not alone in anything I go through. There are other teens and young adults who are riding the same rollercoaster. Having access to NF connect sessions makes you feel like you are a part of a movement and a family. It is something that makes you feel at home"
There is no pressure for people to attend these sessions, but it's easy and free to register with the freedom to attend as many or as few sessions as you like. As tired as we all are of Zoom, the benefits of this way of working and connecting has often outweighed the downsides.
We’ve connected with people throughout the year that have not been able to attend events hosted by the Children's Tumour Foundation (CTF) before and we’ve seen friendships grow within the groups that never would have happened unless we had connected virtually.
At times it can be hard to find people who understand NF. Family and friends are often a great support, but being in a space where you don’t have to explain NF and you know that everyone gets it, is also very powerful.
We would love to tell you about all the wonderful conversations and moments that have taken place during these monthly catch ups, but we can’t. We don’t record the sessions as they are designed to be a private, safe space where people can come along and share feelings, some laughs, or to talk about the impact that NF is having on their life.
Throughout the year we have invited guest speakers who have provided information, inspiration and even some creative fun. Guests have included:
Sally Maspero from the Children’s Hospital at Westmead who shared her in-depth clinical knowledge of NF with parents and carers.
Associate Professor Yemima Berman and Dr Rebecca Saunderson from the NF Clinic at Royal North Shore Hospital who talked about advances at their clinic and treatment options.
Heather Rehtlane, a body positive advocate and young adult with NF joined a session to talk openly about her experience of dealing with the challenges of high school and body image as a teen.
"Having a chance to speak at the NF connect night for young adults and teenagers was an awesome experience. I loved listening to everyone’s story, each so different to the next, and getting a chance to share my own with them. To anyone questioning whether or not they should jump on the next NF Connect call, I highly recommend that you do. You’ll make new friends, get a chance to ask questions, share your story and more!"
Josh Langley, a children’s author who joined us to share his experiences of using creativity as a path to navigate a way through anxiety. He shared tips on tapping in to your own creativity and why just getting started on a project can lead to incredible results.
The monthly sessions have provided some great moments of connection throughout the year. So, thank you to everyone who has taken time out to join a session.
As a pilot program, it has been hugely successful and an opportunity that will extend into 2021. We are looking forward to connecting you with information, support and with each other in the year ahead.