Phelan-McDermid Syndrome Website Update
by Diane Linnehan, PMSF Director of Operations The new PMSF website launched on August 11th! With the help of our amazing…
Posts about legislative activities to advocate for those with Phelan-McDermid syndrome
Maria runs for John
We are so thankful to Maria Punzo, who recently completed the Queens Half Marathon in honor of her nephew, John Welsh.…
Stronger for Ben
PMS Mom Working @Stronger_for_Ben Chardell Buchanan, a Registered Dietitian Nutritionist and PMS mom to Ben help parents of children with…
TeamMatthewLuis
#TeamMatthewLuis When our sweet and beautiful five year old son, Matthew Luis Castillo, was diagnosed with Phelan McDermid Syndrome it was…
Living a Life of Rarity
Spotlight on Living with Phelan-McDermid syndrome.Many of our parents have chosen to express their truth through words and images on websites…
Grit and Grace
PMS mom and PMSF Regional REP, Jenn Carter, is creating an adventurous life with her family and sharing the raw truth…
Phelan-Lucky 2021
This year was the largest and most successful campaign that we have had to date.As February draws to a close, the…
BIO Rare Disease Summit
BIO Rare Disease Summit by Tony Samuel The 2019 BIO Patient & Health Advocacy Summit in Washington D.C. brings together academia,…
PMSF leads coalition to increase research
By Mark Vieth PMSF Legislative Advocacy Consultant/Sr. Vice President, Cavarrochi Ruscio Dennis Associates Gastrointestinal (GI) symptoms –such as constipation and reflux…
Bio Patient & Health Advocacy
By Tony Samuel, Father to Nadia Bio Patient & Health Advocacy Summit 2018 The 7th annual Bio Patient & Health Advocacy Summit…