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Doing whatever it takes.

Board of Directors

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

Susan Triunfo

Susan Triunfo

President, Tyrone, GA

Grandmother of Logan.

I am the grandmother of a little boy, Logan, who was born in 2010 with Mowat-Wilson Syndrome. He is such a joy and a blessing! He is dearly loved by his family and their friends. His various medical struggles prompted me to become a founding member of the Mowat-Wilson Syndrome Foundation. I graduated from the University of Tennessee with a degree in microbiology. I am a certified medical technologist with work in both hospital, research and corporate settings. In addition, I have training in logistics and customer service with Kimberly-Clark Corporation. My desire for this foundation is to be the best resource for families affected by Mowat-Wilson Syndrome. In addition, we want to raise awareness and support research and education for Mowat-Wilson Syndrome. We are a small community with huge hearts and our angels and their families deserve the best resources that we can find to help us all through this journey.

Deborah Curry

Deborah Curry

Vice 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.

Annette Arnold

Annette Arnold

Treasurer, Kennesaw, GA

Grandmother of Logan.

My 4 year old grandson, Logan, has Mowat-Wilson Syndrome. He is my only grandchild and the joy of my life! I graduated from Georgia State University with a degree in Accounting, and from Kennesaw State University with an Executive Masters of Business Administration. I have been a Certified Public Accountant since 1996, and have made a career in commercial real estate investment accounting. Currently I am VP and Controller at Taylor & Mathis, Inc. in Kennesaw, GA. I am vitally interested in financial literacy and participate with many organizations in programs for elementary, middle and high school students helping them to understand the life skill of managing money. Seeing the impact of Mowat-Wilson Syndrome on my grandson and his family compels me to get involved to improve the resources available to all families struggling with the diagnosis, care, and education of their MWS children. Collectively we can work to raise awareness and provide support for the unique challenges of these precious children and their families.

Karen Baer

Karen Baer

Secretary, Houston, TX

Grandmother of Addison.

Karen is the grandmother of four beautiful children, including Addison, a loving little girl who was diagnosed with Mowat-Wilson Syndrome in 2013. Karen is a retired RN with a work history including labor and delivery, newborn nursery and public health. She holds a Master’s Degree in Nursing from Oral Roberts University with a concentration in Nursing of Children. Her undergraduate work includes a BSN from the University of Tulsa and a BS in Chemistry from Mary Washington College. Karen’s desire is to support families of children with Mowat-Wilson Syndrome and increase awareness among health care providers to facilitate earlier diagnosis and comprehensive treatment.

David Curry

David Curry

Director, Las Vegas, NV

Grandfather of Chase.

David Curry has been employed as a building material sales representative, with Desert Lumber Co., for 25 years. He created their original website. In 2004; after his grandson, Chase, was diagnosed with Mowat-Wilson Syndrome; he developed the website mowatwilson.org. In 2006, he took over as moderator of the online support group for MWS. He has spent countless hours hunting for relevant material to link to the website, to provide much needed information to caregivers.

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.

Katie Fineberg

Katie Fineberg

Director, Avon, CT

Mother of Zoe.

I am the Mother of 4 and 1/2 year old 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, age 7, 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.

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.

Sandie Flannery

Sandie Flannery

Director, Effort, PA

Mother of Jillian.

Mother of an adult daughter with MWS. Has Master’s Degree in Early Childhood Special Education. Worked as an Early Intervention Teacher and adjunct professor of Special education at East Stroudsburg University (currently retired). Works with disabled orphans and provide trainings for parents and providers of children with disabilities in Eastern Europe. Active in local Special Needs community and activities. Regional contact for Mowat-Wilson Syndrome Foundation.

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.

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