Doing whatever it takes.

Our Leadership

We are a team of dedicated parents, grandparents, and advocates, ready to do whatever it takes to support the MWS community and their families.

Board of Directors

Paul Jacobi

Paul Jacobi

President, Milford, CT

Friend of Bella.

Paul Jacobi has been an attorney for over 40 years. He is the President and Managing Partner of a law firm in Milford, CT. He grew up in the Bronx and currently lives in Connecticut with his wife Kathy.

Deborah Curry

Deborah Curry

Vice-President, Las Vegas, NV

Grandmother of Chase.

Deborah Curry was employed in the construction industry for more than 40 years prior to retiring in 2020. She held several management positions and served on the board of directors of several organizations, mostly relating to the construction industry. Her grandson, Chase was diagnosed with Mowat-Wilson Syndrome in April, 2003. She has been very involved with his care and with raising awareness of MWS. She is the founder of the Mowat-Wilson Syndrome Foundation.

Karen Key

Karen Key

Treasurer, Appling - GA

Mother of Lauren.

Karen Key has been employed in the accounting field for over 20 years, primarily in roles responsible for financial statement preparation and analysis. She currently serves as the Assistant Controller for Corporate Accounting at AU Health System in Augusta, GA. Karen’s youngest daughter, Lauren, was born in 2003 and diagnosed with Mowat-Wilson Syndrome in 2006. Lauren enjoys school & the school bus, watching outdoor sports, splashing in the pool, car rides with her older sister Hannah, and all genres of music. Karen lives in Appling, GA with her husband Steven and family.

Catherine Tolman

Catherine Tolman

Secretary, Annapolis, MD

Mother of Natalie.

I am mom to Natalie who was diagnosed with MWS in 2015 at 11 months old. Along with her sister, Amelia, the girls keep me on my toes! I became interested in being on the board of MWSF during the 2017 MWS Family Conference. I realized I want to help more. I want to help welcome and reach out to newly diagnosed families, with emphasis on the children and adults with MWS and also the parents who are new to the special needs world. The MWS support group on Facebook has been a large part of my and my husband, Chris’, coming to terms with Natalie’s diagnosis. I would like to help ensure that anyone who joins this family has the support they need and knows that they are not alone. I am formerly employed as a research technician at the National Institutes of Health and I hope that my research background may assist with MWS research going forward.

Dr. Adero C E Allison, PhD

Dr. Adero C E Allison, PhD

Director, Phoenix, AZ

Dr. Allison’s background combines music, disability and social sciences. Her experience has encompassed the use of music therapy with clients in vocational training programs, facilitating large systems change projects, executive and family transition coaching as well as work with diverse students in higher education. Her current responsibilities include development and expansion of services to provide alternative access accommodations to print and audio/video materials while helping faculty and staff proactively design for greater accessibility. Dr. Allison is a practicing sociologist whose focus is on systems change related to disability, diversity, organizational growth and personal transformation. Her research interests are informed by experiences in service delivery, organizational development, community leadership and organizational behavior with a current emphasis on: spirituality & leadership and structural inequality & diversity. “I specialize in helping people connect their dreams and values to actions that will further their goals. My research on Trauma and Transcendence grew from my passion to help people live better lives.“

Laura Chrysostomo

Laura Chrysostomo

Director, Milford, CT

Mother of Isabella.

Mother of Isabella, who was born with Mowat-Wilson Syndrome in 2003. Board member, educator and director of marketing of the Spiritist Society of Bridgeport and TriState Spiritist Federation, non-profit organizations dedicated to study and dissemination of Spiritism based on the works of Allan Kardec. Former board member of Bodie’s Place, a non-profit organization that built and maintains an all-accessible playground in Milford, CT. Member of the marketing team for North Sails, LLC.

Katie Fineberg

Katie Fineberg

Director, Avon, CT

Mother of Zoe.

I am the mother of Zoe, who was diagnosed with Mowat-Wilson Syndrome when she was 21 months old. Zoe is an amazing, determined little girl, and my husband, Mark, and I are extremely proud to be her parents. She has an older sister Hayley, who she adores and the feeling is mutual. For the last 12 years I have been a professional Hairstylist, but my main passion and focus is being a stay-at-home mom. As a volunteer for the Jewish Federation of Greater Hartford, I am one of the Co-Founders of The Pearl Society, an organization focusing on Jewish women who want to make a difference in Greater Hartford, Israel and in the Jewish Communities worldwide.

John Sell

John Sell

Director, Barre,VT

Father of Christian.

Wendy and I are the parents of Christian and Justin. Christian was diagnosed in June 2015 when he was 23 ½ years old. I have worked for the Barre School District for 17 years and am currently the Network Administrator. For the past 10 years I have taken game pictures for the families of the Norwich Men’s Hockey team’s (2017 D3 National Champions). For the past 7 years I have also been the official Barre City Fire Dept. photographer. In our free time, we are avid music lovers. We attend a lot of concerts throughout New England including larger shows like Billy Joel and Elton John. We have attended 49 - 1964 The Tribute shows since 1996. I think Christian is their biggest fan!

Al Triunfo

Al Triunfo

Director, Atlanta, GA

Grandfather of Logan.

I’m a graduate of the University of Tennessee with a BA Degree in Biology. For the past 37 years, I have been employed in the pharmaceutical industry, mainly focusing on sales, marketing and leadership development. I also have the opportunity to work closely with physicians and other healthcare practioners, providing support for patient care and education. My current position is Sr. Vice President for Meda Pharmaceuticals. My grandson Logan was born in January, 2010 and diagnosed with Mowat-Wilson Syndrome about 8 months later. He has an amazing ability to cope with his challenges, all while keeping a wonderful smile on his face. It is that personality that helps me keep life and what’s important in perspective. I firmly believe in the need for the type of support the Mowat-Wilson Syndrome Foundation strives to provide and I hope to use my relationships in both the medical and business communities to advance the goals of the Foundation.

Felisha L. Norrington, MSW, LMSW

Felisha L. Norrington, MSW, LMSW

Director

Felisha is a licensed master social worker in the state of Georgia and a higher education administrator at Georgia State University in Atlanta, GA. She served as her mother’s caregiver for 12 years. That experience led to her want to assist, educate and advocate for other caregivers.

In May 2019, she earned the Caregiving Issues and Management Certificate from Georgia Southwestern State University. Felisha understands the needs of caregivers and can help them with identifying needs, support systems, discussing difficult topics, address emotional concerns and creating a care plan.

In her free time, Felisha enjoys cooking, trying new restaurants, going to museums and the theater and spending time with family and friends.

Sandor Piszar

Sandor Piszar

Director

Sandor Piszar is vice president of GM Envolve, responsible for fleet, commercial & government sales as well as supporting businesses with mobility, energy, delivery and business insights needs.

Prior to this position, Piszar held a variety of leadership roles including vice president of GM Canada where he was a member of the board of directors, as well as other positions over his 25+ years with GM.

A graduate of Eastern Michigan University, he also has an MBA from University of Phoenix and completed the Chief Marketing Officer Program from Northwestern University, Kellogg School of Management as well as the Leading With Impact Executive Training Program from the University of Michigan, Stephen M. Ross School of Business.

Sandor and his wife Heather have 4 children, including their daughter Sarah who is a person with Mowat-Wilson Syndrome

 Adam Batchelor

Adam Batchelor

Director

Father of Harper
I am so proud to be Harper and Hope’s dad. Harper is an amazing little girl who was diagnosed with MWS in 2021 after a six-year journey to understand what made her so unique. Hope is her incredible, helpful little sister. When I’m not spending time with our family, I work for the Pennsylvania Institute of CPAs as the Chief Operating Officer and serve as the CEO of CPA Crossings, LLC. I have spent my career helping non-profits, individuals, and teams grow and succeed. My wife, Melissa, and I live with our girls in the Philadelphia area.

Staff Members & Key Volunteers

Jeanette May

Jeanette May

Executive Director

Dr. May is the President of MaySquare – a small women/veteran owned business focused on supporting nonprofits in the healthcare space. Prior to MaySquare, Dr. May was faculty for the Surgical Outcomes Research Program at the University of Wisconsin, where she was the Senior Director for the Surgical Collaborative of Wisconsin. Prior to her appointment with the University, Dr. May was the lead researcher and disparities expert for the Centers for Medicare and Medicaid National Impact Assessment Quality Measurement report. Dr. May serves on several technical panels and advisory committees including the National Quality Forum Technical Expert Panel for same day access measurement for mental health. She has held previous positions at both large academic institutions and health systems with much of her efforts focused on leading strategy development, implementing collaboratives and coalitions at the state level, and supporting health initiatives/impact studies. In addition, Jeanette has been a part of many large NIH collaborative grants in the areas of population health, rural health, and cancer.

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