The Mitchell and Friends Foundation

Mitchell’s Syndrome or Acox1 gain-of-function is the rarest of rare genetic disorders with only 25 individuals diagnosed in history. This syndrome is progressive, aggressive, fatal, and currently without a cure. Mitchell’s Syndrome onsets at different ages affecting nerve function which affects hearing, eyesight, and every function of the body. Many of our kids want to run around, play, hang out with their friends, and dream about going to college. Without a treatment then our kids may not be able to live out their dreams.

Mitchell Herndon was the first patient diagnosed and sacrificed everything to find a treatment. His parents Michele and Matt Herndon continue his legacy in finding a treatment for those still living with Mitchell Syndrome and thus created the Mitchell and Friends Foundation. Because of their work and continued advocacy they have been able to organize three research studies which will advance our knowledge of Mitchell Syndrome and provide treatment options to the patients; a fruit fly treatment study at Houston Methodist, a natural history study, and the development of gene therapy at Washington University. Without this research these children will continue to be at the hands of this fatal condition. Because there are so few diagnosed, there currently isn’t a public interest in funding the research which is why we the families are raising the money to fund it ourselves. The current research is so promising and the goal is attainable with everyone’s help. Every penny goes directly towards the Mitchell and Friends Foundation to fund the research.

All of our kids diagnosed are so sweet and strong, trying their hardest to live their childhood/teenage years in the best way that they can. They have been through more medically than any of us will ever experience, often times horrific and traumatic. They are so deserving of a full life without these struggles. All of their families are fighting to give them a chance and a real treatment that will see them into adulthood. Please join with us to honor Mitchell’s legacy and find a treatment for these children.

To read more about each child’s story as well as all the details of the research studies please visit the foundation’s website