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
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.
Adam Batchelor
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.
Karen Key
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
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. 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.“
Al Triunfo
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 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 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
William Hillmer
William “Bill” Hillmer is currently senior director, trade strategy, contracting and operations in BioPharma. He has nearly 30 years of experiences in the pharmaceutical industry working in various roles in market access and trade. He also has significant experience working with rare diseases from a payer and advocacy perspective. Bill earned his undergraduate degree from the University of Detroit and his masters degree from Western Michigan University.
Bill was also an alderman for seven years in Missouri where he worked closely with the mayor, alderman and committee chairs to develop and approve regulations and establish policy for the city of Weldon Spring, MO.
Along with his years of healthcare experience , Bill has served on several non-profit boards and committees supporting literacy, youth sports and sea life preservation. He is the father of two adult boys and has been married for 32 years.
Lauren Noonan
Lauren and her husband Matt, welcomed their daughter Jane in September 2023. After a shocking month in the NICU, Jane received her MWS diagnosis. The past year has been a rollercoaster of highs and lows as they have learned how to navigate the rare disease world. Lauren and Matt are proud parents to Jane (1.5) and her 3 siblings Isabelle (11), Henry (9), and Jack (6). Lauren considers her main life’s work to be nurturing and supporting each of her kids on their unique journeys and providing a happy home for them. The family enjoys a house full of animals, endless sports endeavors, LOTS of travel adventures, and spending time with their community and extended family.
Lauren’s educational background consists of a BA in Psychology from UNC Wilmington and a BSN from Emory University. Professionally, she worked at Emory University Hospital Midtown in Atlanta, GA as a labor and delivery nurse from 2010-2020. She then shifted into the home birth world in 2021, working as a midwife birth assistant and also started her own business serving as a birth doula.
Since Jane‘s birth, Lauren now sees her "work life" as learning about MWS, researching therapy and treatment options, and managing Jane’s therapy and appointment schedule. Her passion has become advocating for MWS, and bringing awareness of the syndrome to the rare disease community and beyond. She spends any time she can get learning how to involve MWS in the necessary research needed to hopefully be able to explore the possibilities around one day developing therapeutics. This is ultimately what led to her involvement in the foundation and taking a position on the board of directors. She is honored and excited to be a part of the foundation and furthering its mission of family/community support, advocacy and research advancement!
Lauren and her family currently reside in Atlanta, GA.
Kristin Jewell
Kristin Jewell is honored to join the Board of Directors for the Mowat-Wilson Syndrome Foundation, where she is dedicated to supporting families and advancing awareness of this rare genetic condition. A mother of two, Kristin’s journey with Mowat-Wilson Syndrome began when her youngest child, Wylie, was diagnosed at just six months old. This life-changing experience has fueled her passion for advocacy, education, and creating a strong support network for families navigating similar challenges.
Professionally, Kristin serves as the Manager of Marketing, Public Relations, and Air Service Development at Baton Rouge Metropolitan Airport (BTR). With a background in Industrial-Organizational Psychology and years of experience in public service, she brings strategic vision, communication expertise, and a deep commitment to community engagement to her role on the Board.
Kristin, her husband Dustin, and their two beautiful children, Camille (age 5) and Wylie (age 1.5), live in South Louisiana, where they have embraced the challenges and joys of raising a child with Mowat-Wilson Syndrome. Kristin is committed to using her personal experiences and professional skills to further the Foundation’s mission of improving the lives of individuals with Mowat-Wilson Syndrome and their families.
Staff Members & Key Volunteers
Jeanette May
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.
