Our Mission

Our mission is to advance collaborative research that will improve the quality of life for people with MEPAN Syndrome and related genetic disorders.

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Danny and Nikki Miller established the MEPAN Foundation after their sons Carson and Chase were diagnosed with MEPAN Syndrome in 2018 and learning that there were no treatments that could help them. It was granted tax-exempt 501(c)(3) status in the U.S. in 2019.

The Team

Danny Miller

Chief Executive Officer

Nikki Miller

Chief Financial Officer

Gali Heimer, MD, PhD

Chief Science Advisor

More About Us

 

MEPAN affects all aspects of voluntary movement. At home, Carson and Chase require extensive help with dressing, feeding, bathing, and all the daily activities that we take for granted. The boys are highly expressive but they can't produce speech, so they are learning to use augmentative communication devices to communicate their needs to their caregivers and the people around them.

 

Carson and Chase began doing physical, occupational and speech therapy before they were 18 months old. MEPAN can erode motor function over time, but the boys continue to have therapy to help them maintain the skills they have. Because they cannot walk independently, they need wheelchairs for mobility. The boys are in mainstream elementary school classes and have 1:1 aides at school to help them, but their ability to interact with their peers is limited by their physical challenges. Despite this, they show remarkable engagement in their academic work and with their classmates.

Though MEPAN has challenged Carson and Chase physically, their spirits remain untouched. The joy and happiness that they bring to us and the people around them is a daily reminder to embrace the differences, love unconditionally, and live in the service of others.

 
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