Support
Whilst we are on a journey towards a treatment for MEF2C Haploinsufficiency Syndrome, the MEF2C Foundation is here to support everyone along the way. Our support page features “When you first get your diagnosis”, activities to do with your mefty or a moment to focus on yourself, the MEF2C Foundation is here for you. We will continue to expand our support for a families and those living with MCHS so do sign up to our mailing list to get the latest updates. Together #wegothis
When you first get your diagnosis
First of all, welcome! Let us start by telling you that you are not alone. What now feels incredibly daunting is only the beginning of a new journey for you and your family. What now feels like an unsurmountable mountain, will become easier to climb. Things will no longer be exactly what you had imagined but we are here to help and we hope we can provide you with useful support and information in this journey. Please navigate this page to find more information about the condition, resources and support for families as well as insights into the research and treatment development work that we are driving. If you want to get involved (we need you!) and help us change the future of all the affected patients, please navigate to Fundraising and how to help.
Be kind on yourself and give your self time, together #wegotthis.
Join the Private Parent Support Group on Facebook to connect with like minded families, with this diagnosis, across the world. It is a great resource!
Yoga and Mindfulness sessions for MEF2C Parent and Carers
(Coming soon!) We are happy to share that we have partnered with a specialist yoga instructor to offer global virtual yoga and mindfulness sessions to all of our MEF2C parents and carers. We know, all too well, that there are aches and pains that result from caring for a family member with reduced mobility, alongside the additional stress and worries. These sessions are targeted to decompress and reduce some of those.
The sessions are virtual (schedule coming soon!) and there is a small pay-as-you-go fee of £5 per session (per person or household). This would cover the cost of running the class and any excess funds would go to support the Foundation’s projects.
If you would like more information or to register your interest, click the button below or get in touch at: enquiries@mef2cfoundation.com
The Great Mefty Art Project
(Coming soon!) This activity is available to all families with a MEF2C affected patient.
All participants will receive a "how to" guide and an art kit, to engage in a therapeutic painting activity with your children.
Letting their creative juices flow, and using the hands to explore paints and textures, will help develop their motor skills, coordination and it will provide them with some valuable sensory inputs. The MEF2C children and young adults commonly have many sensory processing issues, especially when it comes to the use of their hands. This is usually one of the motor skills that is most severely delayed. Many don’t gain good control of their hands until they reach adolescence, and we want to give them the opportunity to practice and create a beautiful piece of art in the process!
Have some fun with them while you help them develop this important skill! If you would like more information or to register your interest, click the button below or get in touch at: enquiries@mef2cfoundation.com
