MEFTIES RUN CLUB
MEFTIES RUN CLUB
MEF2C Foundation Australia at the
Bondi To Manly Ultra (October 2026)
G’day I’m Sean Rafferty, one of the directors of MEF2C Foundation Australia, which was established for those with the rare genetic condition known as MEF2C Haploinsufficiency Syndrome, or MCHS. It’s a disorder of the MEF2C gene, which is an important gene for the development of the brain and other systems in the body.
Those with MCHS are likely to be profoundly intellectually disabled, be prone to seizures, have gross and fine motor disabilities, be non-verbal, and require lifelong care.
Our daughter, Thea (pictured above) has MCHS, and we established the Foundation with other parents to raise awareness of the condition, to support research into MCHS and to build community for those with MCHS and their families. We want to make sure that parents and carers with a loved one with MCHS do not feel alone, and provide them with information and hope.
We have also started the Mefties Run Club! In the MEF2C community we often call our loved ones with MCHS ‘Mefties’, a name we love. Friends and family were keen to run for the foundation to raise funds and awareness and we thought Mefties Run Club would be a fun way to encourage others to do the same.
Membership of Mefties Run Club is attained by running and fundraising for MEF2C Foundation Australia. Members include Thea’s Grandad, John (Paris Marathon 2025) Thea’s Uncle, Rory (Berlin Marathon 2025) and Thea’s 10 year-old siblings, twins Finn and Eve (Bridge to Brisbane 2025).
In 2026 our goal is to have 80 new members! We are putting teams of four together to run the iconic Bondi to Manly Ultra (4 x 20km legs) in late October 2026 for Mefties Run Club, and we want you to form or join a team. It’s an awesome event along a beautiful course. It’s a challenging, emotional, and fun day out, and we’d love it if you could join us!
This year we are fundraising to support research into MCHS, specifically to help fund a Natural History Study for MCHS – the Volãre Study – which is a longitudinal study at Weill Cornell Medicine in New York. The study is foundational for providing a baseline of symptoms which will both inform the medial community and be used to measure the success of any future clinical trials. We are partnering with MEF2C organisations in the UK (MEF2C Foundation), the US (Rare Bird) and Germany (MEF2C Hilfsorganisation) on this project, which is not yet fully funded.
We are also fundraising to support our community building, which is a crucially important part of what we do to share experiences, to build knowledge and relationships so parents and carers can support each other through what can be a lonely and isolating journey. The online community is very important but there’s nothing like bringing people together and meeting in person. We need resources to do this in a way that is accessible and meaningful to the community.
If you want join us and form - or join - a team, get in touch via the form below, or message us on our Instagram or Facebook - social media links below.
If you can’t run there are other ways to join our fundraiser. You can provide support to our runners, share our fundraiser with your community, or make a donation.
Thank you! Sean and the MEF2C Foundation Australia team. More info to come…