PMD Family Stories 

Read about and connect with PMD families.

One of the functions of the PMD Foundation website is to bring everyone together as a community. It is our intention that families with PMD-affected children should get to know one another. Our community of families tell us that this is particularly helpful when they first receive a diagnosis.

Our goal is to make it easier for the PMD community to connect.

If you’d like to be connected to a PMD family, you can CONTACT US.

Camden Holmes was diagnosed with PMD at 13-months of age.

Camden Holmes was diagnosed with PMD at 13-months of age.


Recent Family Stories

Share your story with our PMD families:

Please send your information to contact@pmdfoundation.org.  We will add family stories as we receive them.  When submitting your information and story, please make sure you include the following:

  1. The name of the PMD-affected individual

  2. Their birthdate

  3. For those who are now angels, the date of their passing

  4. Location (city, state, and country)

  5. Diagnosis – connatal, classic, SPG2 or unknown – and how diagnosed.

  6. Age at diagnosis.

  7. Genetic mutation (duplication, deletion, etc.) if known.

  8. Family info, parents’ names, siblings’ names and where they fall in family order. Does PMD run in the extended family or was this a “first time” diagnosis?

  9. Your contact information and your preference on if you’d be open to speaking to newly diagnosed families.

  10. Up to 5 pictures with captions that identify others in photos. If not by name, at least by relation (ie. Nick’s Aunt, Jack’s Grandma, etc.)

  11. Permission to post your information and pictures on our website (including contact information if authorized.)

  12. And, of course, your stories. Specific incidents, a summarized history, or whatever format you prefer is acceptable.