PMSF OPERATIONS STAFF
Diane Linnehan
Co-interim Chief Executive Officer, Chief Operating Officer
Diane earned a Bachelor of Science degree in Industrial Engineering from the University of Massachusetts. She brings over 28 years experience in operations, quality system & program development, and disability advocacy to the Foundation, where her work supports a community that is close to her heart. Diane’s daughter, Courtney, was diagnosed with Phelan-McDermid syndrome at age 21. Diane is a certified state educational advocate and sits on the MA Statewide Quality Council. She is the co-creator of an award winning community-based recreation program and she designed and manages her daughter’s self-directed adult program.
Diane lives in the Boston area with her husband, Mike, Courtney and their dog, Ted. Diane’s greatest joy is being mom to her three adult children and watching her family grow. Diane’s work is motivated by the extraordinary families who live with Phelan-McDermid syndrome and she strongly believes that if we listen carefully, our family stories hold clues to a greater understanding of the syndrome we battle daily. Diane believes that together we can improve care and find treatments and cures that will improve lives.
Shira Johnson, CFRD
Co-interim Chief Executive Officer, Chief Development Officer
Shira is foremost a mom, wife, dog wrangler, and horse lover. She had a passion for child advocacy and received my bachelor’s degree from University of Maryland (Go Terps!) in Family Studies. Originally from Long Island, NY she ventured to the Midwest where she received my Masters in Public Administration from Mizzou. Shira eventually landed in Florida because wearing shorts in December sounded pretty good to her. She has worked as a nonprofit professional and consultant for her entire career.
Helping to raise funds for PMSF blends Shira’s passion for child advocacy, desire to support families, and skillset as a certified fundraising executive. She has a daughter who is neurodivergent and while she knew nothing about Phelan-McDermid syndrome when she started working for PMSF, Shira has become very passionate about this community. Her “why” is working toward treatments and cures while walking alongside families as they navigate day to day life.
Priscilla Hackstadt
Chief Finance Officer
Priscilla lives in Suwanee Georgia (Metro Atlanta) and has been married to her husband Scott for 32 years. Together they are parents to Emma (25) and Christopher (18). Christopher was diagnosed with Phelan-McDermid Syndrome in 2007.
Priscilla started her career in public accounting in 1993, working in both audit and tax areas. While becoming a mother changed her career path to private, she maintains her CPA license in both Georgia and Alabama.
Amanda Bergen,
Director of Communications
Most of Amanda’s career was in people leadership and operations until she took some time to become a full-time caregiver for her daughter, Hudson, who was diagnosed with Phelan-McDermid syndrome at the age of 2, and her son, Sullivan. Amanda and her husband, Bill together navigate the challenges of raising a family. At PMSF, she serve on the Development Committee and hold the role of Science & Research Project Manager. Amanda’s family currently resides in Santa Clarita, CA, and she’s dedicated to making a meaningful impact in the lives of those affected by Phelan-McDermid syndrome.
Amanda’s ‘why’ at PMSF is rooted in her personal journey. As a caregiver for her daughter, Hudson, who battles Phelan-McDermid syndrome, she understands the immense challenges faced by those with this condition. She is driven by the relentless pursuit of better treatments and ultimately a cure, not just for her daughter, but for all families affected by Phelan-McDermid syndrome. Amanda’s ‘why’ is the hope of a brighter future, where PMS no longer imposes such overwhelming challenges, where we can provide comfort, understanding, and the possibility of a healthier life for those we serve.
Carla D’Imperio
Director of Family Support
As Family Support Specialist, Carla D’Imperio brings a background in education as well as her own experience caring for her child with Phelan-McDermid syndrome, her son, Matthew (age eight). Carla is a graduate of Boston University and Pace University, and she completed her bilingual studies in Spanish at Universidad Autónoma de Madrid. She worked as a middle school teacher in New York City followed by a number of years as a program director then a managing director for Teach For America. Carla’s professional background and personal experience as an advocate, volunteer, and provider of peer-to-peer support is a true asset to our community. Her sensitivity and first-hand knowledge of the challenges and joys of living with Phelan-McDermid syndrome guide her as she helps to provide support programs and resources to our families worldwide.
My eight-year-old son Matthew is my “why”. Everything we are accomplishing at PMSF from research initiatives to caregiver support groups is to help individuals like my Matthew and families like my own family. I love supporting our beautiful families as we walk through the challenges of caring for someone with Phelan-McDermid syndrome side-by-side. I can’t think of any more valuable work I could take on with individuals like my sweet Matthew at the heart of the mission.
Kathy Fiscus
Data Manager
Kathy lives in Iowa with her two children, Naomi and Cyrus. Her son was diagnosed with Phelan-McDermid syndrome in 2013 when he was two years old. Kathy has been a home educator since 2012– working with my daughter to give her a unique and individualized education. Cyrus’s PMS diagnosis spurred her on to affect change for him and other special needs families in our area through a local nonprofit. Kathy is a backyard gardener, and the proud parent of not enough houseplants.
Kathy had an amazing experience working with the PMSF team as a volunteer from 2017 to 2019 on the conference planning committee and as the Iowa REP, so when there was a chance to join the staff in 2019, she jumped on the opportunity to further support the PMSF community. Through my role at PMSF, Kathy can use her advocacy and nonprofit administration experience to help families like hers navigate life with Phelan-McDermid syndrome.
Elinor Platt
Accounting Manager
Elinor has been assisting the Phelan-McDermid Syndrome Foundation with bookkeeping needs for about 14 years now. She is originally from the small town of Ridgefield, Connecticut and graduated from Katharine Gibbs Business School. Elinor and her husband Doug, moved their family to Florida in the summer of 1990 and enjoy boating, fishing and golf. They are the proud parents of two adult sons, Doug and Randy, and four fur babies (miniature poodles) and also have two beautiful grandchildren who we love to spoil! She is the Accounting Manager at the PMSF office in Osprey, Florida and works closely with our Finance Director, Priscilla, handling all the accounting functions for the Foundation.
When Elinor first started working for PMSF, she was a contractor with several bookkeeping clients. She worked to get them up and running with the QuickBooks accounting program and she also assisted with some administrative duties. Elinor’s “why” is that as time went on, she got to know families and has seen how this amazing community helps and cares for one another. The families’ strength and support of each other only further encourages our wonderful PMSF team, which she is honored to be a part of working toward treatments or a cure for all that are affected by this syndrome.