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

Deborah Curry

Deborah Curry

President, Las Vegas, NV

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.

Lori Linn

Lori Linn

Vice-President, Hickory, NC

Mother of Parker.

We were told from the day Parker was born that he had some sort of genetic abnormality and he was tested for everything. It wasn’t until he was 8 years old, in 2009, that we finally got the diagnosis of MWS. Before Parker was born, I had lived a life on stage and screen and I still keep my feet wet by occasionally working as an actress. I also was a full time elementary school teacher and when Parker was born, I went to part time so that I could get him to therapies and doctor’s appointments. Nine years ago, we left the state where my husband, Leo and I had spent our lives and moved to North Carolina so that I could spend all my time caring for Parker, our only child. I have since, taken to writing books about my boy and someday hope to finish these. My desire for serving on the board is to help other parents, especially the newly diagnosed find their way through all the information and get some direction of where they need to go next. It was so confusing for me and I hope to make it less confusing for others.

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.

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.

Jessica Rakshys

Jessica Rakshys

Driector, Commack, NY

Mother of Jonathan.

Mother of Jonathan, a child with Mowat-Wilson Syndrome. Jessica is a senior associate and design manager and is Mercer’s lead branding representative for MMC. Jessica is one of the founding members of Mercer’s business resource group for Accessibility and Inclusion at MMC companies. AIM’s mission is to be a voice for support, education and awareness around issues faced by the disability community, internally and externally.

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!

Paul Jacobi

Paul Jacobi

Director, 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.

David Miller, DHA, NE-BC

David Miller, DHA, NE-BC

Interim Executive

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.

Staff Members & Key Volunteers

Marcia Smith

Marcia Smith

Executive Director

Marcia is an experienced nonprofit professional that has led nonprofit programs and organizations for 20 years. Previously, she managed large HIV/AIDS programs, Behavioral Health contracts for a large hospital system, and helped start 2 small nonprofit organizations. Marcia graduated with her doctorate degree in business administration and marketing in 2015. Her motto is “Today I will make a difference” and she is committed to the betterment of individuals, organizations, and society at large. Marcia loves to read and travel.

© Copyright - Mowat-Wilson Syndrome Foundation