Newly diagnosed?
Your MEF2C journey starts here.
Receiving a rare genetic diagnosis can be a challenging, overwhelming experience. You’re not alone. As a community of parents of children with MEF2C-related disorders, we’ve all been through this moment and we’re here to help you navigate this life-changing news. First, there are two things we want you to know:
We’re here for you.
The MEF2C Family Foundation is built by families, for families. We understand the emotions that come with a diagnosis because we have been there too. We are here to provide guidance, connection, and hope.
There is hope.
We are living in a time of remarkable scientific advancements, and new treatments for genetic conditions like MEF2C-related disorders are on the horizon. Research is progressing rapidly, and we are actively driving efforts to find solutions. Together, we are working to give all of our children the best possible future.
So what’s next?
Take all the time you need to process this new diagnosis. We have resources for you and ways you can support our efforts when you are ready. Here are some immediate next steps:
Sign up for our mailing list.
Sign up for our email list to receive helpful resources, stay up to date on scientific advancements, and connect with other MEF2C families.
Get informed
Check out our informative Newly-Diagnosed Toolkit, with helpful resources and links for caregivers.
Support research through our online patient registry.
We’re partnered with Citizen, a platform that enables patients with rare conditions to provide secure access to all of their medical data, supporting the acceleration of critical research efforts with minimal effort. Citizen will collect your child’s comprehensive medical history into a secure, digital profile and give you the option to contribute de-identified data to accelerate research. Help our community unlock the insights hiding in our medical data and make huge leaps in understanding MEF2C-related disorders and treatment options.
Sign up for the Citizen MEF2C patient registry today: It only takes 5 minutes.
Join our private group on Mighty.
Parents who subscribe to our email list will receive a link to join our MEF2C community on the Mighty app. To ensure that our Mighty group remains a safe and welcoming space to share personal experiences, we are restricting invitations to parents/caregivers only for the time being.
Reach out to us.
We are here to help you navigate through the complex emotions that come with receiving this diagnosis. Email us at hello@mef2cfamilyfoundation.org to schedule an introductory Zoom call.
Get involved!
The MEF2C Family Foundation is made up of dedicated family members and friends who want to accelerate our path to a cure. You are a key part of helping us accomplish our mission to find treatments for all individuals in the world with MEF2C-related disorders. Whether it’s joining our parent support team, helping with fundraising, getting involved with clinical research, or embarking on one of the countless other volunteer opportunities, we’d love to have you on the team. Contact us at hello@mef2cfamilyfoundation.org.