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
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.
Grandmother of Chase.
Deborah Curry has been employed in the construction industry for more than 30 years. Her current position is as an estimator for Desert Truss, LLC. She has held several management positions. She has 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.
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.
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.“
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.
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.
David Miller, DHA, NE-BC
David Miller recently successfully defended his dissertation and received a doctorate in health-care administration. David also has master’s degrees in healthcare administration and nursing and a BSN. Academics have helped David in his role as a healthcare leader. He has worked in nursing for 30 years, the first six in clinical/bedside positions and the remaining 24 in various leadership roles. When not in school or at work, David enjoys traveling, spending time with family and friends,golfing, cooking and dining out.
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!
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.
Mother of Maci
I am the mother of three children. Our middle child, Maci, was born with severe health complications in 2016 and later diagnosed with MWS in 2017. Despite her many obstacles, she was a light in this world. I am an RN who worked in adult ICU until Maci was born. Maci inspired me to change gears, and I now work in pediatrics, working with children with complex needs. Maci changed our world in many ways with her love and joy. She passed away in 2021 but has inspired us to advocate for kids like her. I take a particular interest in research and learning more about MWS, as well as supporting MWS families in any way I can.
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.
Staff Members & Key Volunteers
Jodi has shared her passion as a nonprofit professional for over 25 years leading nonprofit organizations and programs specifically focused towards supporting and advocating for the disability community. She received her degree in Therapeutic Recreation from the University of South Alabama and began her career with Easter Seals managing adaptive camp programs in AL, IL, and TN and later the Colorado Lions Camp in Woodland Park. Her greatest challenge was the start-up of a therapeutic camping program for children with varying abilities & terminal illnesses in her hometown of Bradenton, FL, which she designed and managed for over 8 years. She has provided consultant services to like-minded nonprofits centered towards grant writing and organizational development. She was a certified case manager for a foster care program in FL, an ARC group home manager in Illinois and the Director of Child & Youth Services for the Department of Defense in the Marshall Islands.
Jodi strongly believes that all people should be respected, included, and celebrated for their unique differences. Jodi enjoys camping, hiking, watching Florida Gator football and spending time with her family.