Our Foundation

Our Mission

It is the mission of the Phelan-McDermid Syndrome Foundation to improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness.

Our Values

To accomplish this mission, there are specific values that we believe in and will use to justify whether what we do is in the best interests of those affected by Phelan-McDermid Syndrome. Those values are:


We believe in the inherent dignity of every person with PMS and their right to live the best life possible.
Compassion: We are motivated to enhance the quality of life of people affected by PMS through our understanding of the challenges among those who are diagnosed and their families, caregivers and communities.


We believe in the strength of an international community of support where those affected by PMS can find acceptance, comfort, information and practical advice. We also believe in the power of scientific collaboration and community to further research.


We will be ethical in our dealings with families, collaborators and other interested groups. We will conduct ourselves with integrity in our handling of money, initiatives, medical information and advice. We will work to disseminate the most up-to-date information to our community.


Susan Lomas

President, Phelan-McDermid Syndrome Foundation

I wish we were strangers. But due to the collateral beauty of our lives, we are family. So, welcome to the window to our world. Our website, our conference, our foundation belongs to you. Our family is here to support you, educate you, involve you. We lift each other up, everyday. Strangers no more.

The Phelan-McDermid Syndrome Foundation is a 501(c)3 nonprofit organization that is funded by individual and corporate donations, community foundation grants, contracts and program revenue.

PMSF | Phelan-McDermid Syndrome Foundation