Research Relationships & Data Readiness
WORKING GROUP:
This group ensures that our connections with researchers studying MEF2C remains strong, and stays on top of the latest developments for MEF2C patients. This group also owns our strategy for data preparedness for clinical trials.
Meets XYZ day of the week every month.
Who we interact with:
Medical Experts and Researchers: We collaborate with researchers and experts to facilitate medical discovery for MEF2C Related Disorders.
Patient Populations: We facilitate upcoming research opportunities and help gather the patients and their families to make these opportunities a reality.
Patient Advocacy Groups: Work with other rare genetic advocacy organizations to identify potential research collaboration.
What we do:
Serve as a resource and representative to researchers investigating MEF2C, including Simon’s Searchlight and SFARI researchers.
Support the development of longitudinal natural history data.
Develop and pursue a biobank strategy (iPSC lines, mouse models);
Track scientific developments and identify opportunities for collaboration and synergy amongst peer groups.
Meet the Team
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Monet Goode
FOUNDER
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Emmett Marsh
DESIGN DIRECTOR
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Eleanor Parks
SUSTAINABILITY DIRECTOR
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Jamie Kokot
CUSTOMER SERVICE MANAGER
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Karl Holland
SALES MANAGER
Volunteer your time and talent.
Does this sound like you?
You believe that we’re on the brink of genetic solutions for our patient population.
You’re interested in the science behind potential solutions for MEF2C Related Disorders
You’re always reading the latest MEF2C research
You’re tracking research projects for the MEF2C community
You’ve got a few hours to give every month, and want to find treatments and support people with MEF2C Related Disorders
If it does, please consider volunteering on the Research Relationships & Data Readiness working group.