Driven by the increased need for families within the Rett Syndrome community to stay connected during the Covid19 pandemic, and by the ongoing need for families to have access to up-to-date information, empowering them to make informed decisions about their child’s care, Rett Connect was created.
Beneath the umbrella of Rett Connect are three key initiatives:
“After hearing our daughter had Rett Syndrome, my husband and I were in a state of shock for many months. We desperately needed reassurance that we were not alone in this challenging journey. So when we were put in touch with another Rett parent it meant so much to us. Someone to say ‘Yes, I understand what you’re feeling’. Someone to share their experiences of working with the different professionals involved. Someone to look up to for practical advice without the fear of sounding stupid. Having another parent to talk to was a lifeline.”
Minati, mum to Tara.
“I would highly recommend to any parent, grandparent or carer to get involved with the Bitesize sessions. To hear from doctors, specialists and parents in a virtual meeting has been really informative and even more so for subjects that don’t currently affect my daughter. Having the opportunity to ask questions directly to experts in such a forum is invaluable, especially in the current climate. I have also found having other attendees asking questions which I may never have thought of or considered, so beneficial and certainly gives you food for thought.”
Louise, mum to Georgia
“It was lovely seeing other parents. It helped me feel not so cut off, lonely or isolated. Everyone’s advice, personal experience and suggestions were, for me, invaluable. I found out about so many practical things that could help ease our daily lives. The most helpful thing is to know that other people understand your situation. I felt really encouraged and reassured at theend of the session: it was a very positive, unexpected pick-me-up. I highly recommend coming along to these sessions and I look forward to attending many more!”
Lisa, mum to Areti
Our long-established P2P scheme matches newly diagnosed parents with trained mentor parents.
In the early days after diagnosis, the support of other families, who have walked in your shoes, can be critical. Often, these connections turn into friendships which last lifetimes!
One of the Reverse Rett team will spend time getting to know newly diagnosed parents before connecting families and will maintain contact for as long as is needed.
If you, or someone you know, is dealing with a new diagnosis and might benefit from this scheme, please get in touch.
Introduced in March 2021, our Bitesize series offer free, weekly, online sessions covering a range of topics relevant to Rett families.
To date, the sessions have covered Covid19 and Rett Syndrome, parental wellbeing, spasticity and movement disorders, common health concerns, eyecare and vision, scoliosis, gastrostomies, reflux and respiratory issues.
Sessions typically feature a 30-minute presentation led by an expert in the field, followed by open Q&A. Parent-panel sessions also draw on the experiences and expertise of parents within the Rett Syndrome community.
You can now watch any/all of our previous Bitesize session recordings in full or as snippets on our YouTube channel here.
The series will continue in September. Keep an eye on our Informational Events page for details of upcoming events and how to book.
Initially a response to the increasing isolation of families during the pandemic, the Family Forum aims to provide a safe, open and inclusive space for those within the Rett community to connect, share, ask and listen.
The sessions run once a month and are without an agenda – topics and discussion are attendee-led and the only expectation is respect for each other.
Never underestimate the emotional benefits of just chatting with other people who ‘get it’, not to mention the practical tips and advice other parents can offer!
These sessions, along with our Bitesize parent panels, have helped to create some useful resources and practical tips about keeping someone with Rett Syndrome healthy.
Keep an eye on our Informational Events page for details of upcoming events and how to book.