Meet Ruth
Ruth is one of our National Support Coordinators and has taken the lead role in implementing this new support initiative.
We sat down with Ruth to discuss how the first NF Connect session went and what we can expect from future sessions.
Why did you start NF Connect?
NF Connect is a new initiative created directly in response to the COVID-19 pandemic. When we were forced to cancel Cupid’s and the four camps that we had planned in SA, ACT, NSW and QLD, so we were looking at ways to ensure that people are still keeping in touch with us and with each other.
What is NF Connect?
It is a series of monthly Zoom chat sessions hosted by CTF support staff. The sessions are broken down into four distant groups, we did this, as we thought it’s a good way to ensure that people of similar ages and life experience are able to meet and talk with each other.
Normally we facilitate camps, community days and help co-ordinate coffee meet ups. But these events are currently on hold or are just in the early stages of starting up again, so we were thinking of ways to ensure that everyone can still engage with other community members in a meaningful way.
We already have closed Facebook groups, which are a great way to ask questions and to see how other people are going, but by creating a forum for people to connect via Zoom we are hoping to engage with people in new ways.
What are the four groups that make up NF Connect and why did you separate the groups?
The groups include:
- Teens who are living with NF: 13-18 year olds
- Young Adults who are living with NF: 18-30 year olds
- Adults living with NF: 30+
- Parents and carers of children with NF.
We broke the groups up in this way as each of these stages of life are different, and we have seen at camps and community events the power of people of similar ages and with similar experiences sharing their stories with each other.
What do you talk about during the sessions?
Everything we talk about during NF Connect is confidential and kept within the bounds of that forum, but generally we talk about any issues people are experiencing, we share information about how different people cope with the impacts of NF along with finding out how CTF can best support everyone. We are also planning a series of guest speakers based on information shared within the NF Connect forum.
A quote I heard the other day was “It’s hard to know what to think until you have heard it said”. It was talking about the power of speaking about your feelings and then getting a deeper understanding of how to best navigate and deal with challenges. I believe we all have the strength to cope with challenges and often it is just about tapping into your own resources and resilience that you might not even know that you had. Often, it’s not until you have said something out loud and shared your experience that you actually find the best way to work things out in your own head. And we feel that by having forums where people can share and connect we can help everyone tap into their own knowledge and power.
So along with sharing your own stories, NF Connect is a chance to listen to the stories of others and to help connect with people in a deeper way.
Why should I join a Zoom Session with people I might not know and what if I'm too shy to open up during the session?
We know some people are totally over using Zoom as a way to communicate, while others have never used it before. But after the first NF Connect Session the CTF team (and based on feedback we have received quite a lot of the participants) have found it to be a good way to interact and to meet new people and to get information from CTF support staff and from other people’s lived experience.
If you’re feeling too shy to connect, you could even try signing up and not turning your video on to begin with. Of course, it’s better if everyone can see you and interact in that way, but I think we can all understand if people are hesitant about joining in, so I don’t think any of the participants would mind if you just joined without video to begin with. Just a thought, and you never know how you will feel about something until you have tried it.
Trying new things can be daunting, but we don’t want anyone to feel vulnerable or exposed, and we have found everyone we have interacted with to be respectful and caring.
Also, you might discover people who live nearby who you can meet up with, or you might find someone from WA, QLD or any other state that you never would have gotten the chance to meet otherwise.
When is the next session and how do I register?
NF Connect calls will generally be held on the second week of each month. Click on your chosen group to download the schedule for the next 12 months.
To register, simply click here and fill in the form at the bottom of the page. Our Support Team will be in touch closer to the session date to let you know how to join the session.