Website Updated: December 1, 2025
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What We Are About:
Saving Children’s Lives through Breaking Research
Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy
Our current focus:
We seek contact with families of children who suffer from SMA-PME or from Farber disease. Has your child been diagnosed with Juvenile Myoclonic Epilepsy (JME) but is not responding to treatments? Does your child exhibit any of these symptoms? Are conventional treatments not working?
- Hearing loss
- Bumps (nodules) on skin
- Clumsiness
- Epileptic seizures
- Trembling
- Hoarse voice
- Learning disabilities
- Falling
If so, please contact us. Your child may have SMA-PME or Farber disease. We want to help you.
See “Contact Us” so we can talk.
SMA-PME is a rare disease. It gets less rare every month as 1 to 4 cases are diagnosed.
Approved 501(c)(3)
Private research is finding solutions.
Children are living in hope of a cure.
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SMA-PME Research 