PMD Foundation Supporting Families Around the World

Pelizaeus-Merzbacher Disease and Pelizaeus-Merzbacher-Like Disease are not impeded by geographic boundaries. Families from all over the world face PMD and PMLD challenges and many parents need help with providing for their children’s needs.

Families Helping Families and Delivering Supplies Across Borders 

Most recently, the PMD Foundation supported a family in the midst of conflict in Ukraine. When the news broke of the Russian blockade and shelling of the Ukrainian city of Odesa, Board member Paul Erena thought of a PMD family living in the war zone. 

Paul Erena coordinates new PMD family outreach for the organization. He has been a PMD dad for 32+ years to son, James. Paul is married to Andrea and they also have a daughter (who is also a terrific sibling), Allison.

Paul reached out to Ukraine resident Larisa, who has a young son with PMD, to see how the PMD Foundation could help. Then, through a network of contacts, Paul got in touch with Meredith, an American ex-pat in Chisinau, Moldova. “Larisa was able to tell Meredith exactly what her son needed for supplies (nutritional supplements, such as formula and pureed baby food) and Meredith was able to purchase those things in Chisinau.” 

Working Together to Overcome Challenges Despite Conflict

With intermittent shelling and interrupted supply lines, finding affordable groceries and supplies is increasingly difficult for families in Ukraine. Thanks to the PMD network, Larisa and her family received the needed supplies within a week. 

Moving forward, Paul and the PMD Foundation are staying in touch with all parties. “We are maintaining contact with both the family and Meredith, in case future help is needed.”

If you’re in a similar situation and need assistance, please reach out to Paul Erena at perena@pmdfoundation.com.