Who We Are:
Mississippi Metabolics Foundation (MMF) is a 501(c)(3) nonprofit, nonpartisan organization dedicated to supporting families of Mississippi who live with rare genetic metabolic disorders/inborn errors of metabolism.
Mississippi Metabolics Foundation (MMF) was founded to raise awareness, educate, and provide support to those living or caring for someone with genetic metabolic disorders/inborn errors of metabolism (IEM). We advocate for the continued expansion and implementation of Newborn Screening Programs and access to available resources for caregivers/patients. MMF promotes and supports further advancements in legislation, research, trials and studies, therapies, targeted treatments, and eventual cures for metabolic disorders, IEM’s, and all rare genetic diseases. We will increase the community involvement in Mississippi for rare genetic metabolic disorders and help families navigate their rare disease journey.
How We Started:
Hi! I am Shannah Hudson, mom to Emmalyn age 11, who has Glutaric Aciduria/Acidemia Type 1 (GA-1). I recently founded Mississippi Metabolics Foundation (MMF), a registered 501(c)(3) nonprofit organization to advocate for all patients in Mississippi who live with rare diseases, specifically metabolic disorders. I was selected as a parent advocate leader for Mississippi to represent the rare disease patient community and have been involved with several organizations in advocacy efforts, including National Organization for Rare Disorders (NORD), NORD’s MS Rare Action Network (RAN), Global Genes as a RARE Foundation Alliance Member, Illumina, Inc. as a Rare Genetic Disease Patient Ambassador, Southeast Regional Genetics Network (SERN/SERGG) as the MS Consumer Alliance Advocate, Organic Acidemia Association (OAA) parent supporter and fellow advocate, and The Everylife Foundation’s Community Congress as a Foundation Advocate. I established Mississippi Metabolics Foundation to support the many parents and children I have met through my networking and rare disease journey and also to represent our metabolic patient community in advocacy.
Ever since I began thinking about starting a nonprofit, I worried about whether I am capable and experienced enough for this overwhelming task. I began this process all on my own and have had to research and learn about nonprofit creation and management along each step of the way. I was reminded during this time of growth that God has prepared me for this and will equip me with the abilities needed to make it happen. As I thought about my past experiences, it struck me that God began preparing me from as early as high school for the life I live now. I attended the MS School for Math and Science and took many science classes, but my favorite was Genetics with Dr. Davidson. I attended MSU for undergrad and got my Business degree and then Ole Miss for my Law degree. My dream through all those years of education was to practice transactional, family, and child advocacy law. After graduating law school in 2008 and passing the bar exam, I struggled as many did from my graduating class to find a job practicing law (remember the recession hit and jobs were scarce). I began working as a trust accountant at a local bank and truly enjoyed my work, co-workers, and time spent there learning new skills. After only a year in this employment, Emmalyn was born and diagnosed with her rare genetic metabolic disorder, GA-1. I quit my job to stay home to manage her medical care and educational needs. I struggled through those early years after her diagnosis with what my purpose in life was to be since all that I had worked for up until this point in life was a distant memory.
I soon realized through my own journey as mom of a medically fragile child that parents/caregivers of newly diagnosed metabolic children are met with fear and confusion after recieving the news of this intimidating diagnosis. I know all about these experiences, emotions, and need for support to cope with this overwhelming disease. As such, I decided I can do something to create this support community for these newly diagnosed patients and their families as they begin this journey of caring for their child and managing this disease.
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