Are you the family of a child diagnosed — or potentially diagnosed — with SMA-PME or Farber disease? We are here for you. Our community of families and researchers spans the globe, and no family should navigate this journey alone.

We especially encourage you to contact us if your child has been diagnosed with Juvenile Myoclonic Epilepsy (JME) that is not responding to standard treatment — this may be an unrecognized case of SMA-PME.

Whether you are a parent, a physician, a researcher, or someone who wants to help — reach out. Every connection matters.