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WSA Structure And Administration

The Williams Syndrome Assocation is made up of people: individuals with Williams syndrome, their families, and interested medical professionals and educators.

Founded by a handful of families in San Diego, CA, the WSA is a volunteer driven 501(c)(3) non-profit organization divided into 16 regions across the US and Puerto Rico. Each region works to provide social and educational opportunities for its members. The WSA also has affiliation with similar international groups.

The WSA has supported nearly 5000 families of individuals with WS since its inception.

Formal By-laws provide a framework for the operation and management of the WSA. 

The organization is administered on four levels:


Board of Trustees 

The Williams Syndrome Association is governed by a volunteer Board of Trustees. Trustees are elected by the membership for three year terms, and may seek re-election. The Board establishes the direction of the association and works closely with the Executive Director and regional volunteers to carry out its goals.

Current Board Officers:

Aine Smalley; Santa Rosa, CA 
Vice President 
Doug Betz; Bellbrook, OH 
Carol Patinkin, MSW; Wilmette, IL 
Jeffrey Baer, CPA; Jackson, MO


Board Members at Large:

Katherine Bove; Jericho, VT
Kate Bierfeldt, Worcester, MA
Sarah Gildings, Maricopa, AZ
Marella Holmes, Lawrenceville, NJ
Karen Levine, Ph.D.; Bedford, MA
Sandy Miller; Simi Valley, CA
Melissa Murphy; Wynnewood, PA
Catherine Norlin; Highland Park, IL
Dean Packard; Chevy Chase, MD
Laurel Rossi; Bedford Corners, NY 
Michelle Self, Ph.D.; Perrysburg, OH
Anthony Vecchia M.D.; Queens Village, NY

Professional Advisory Board

Ursula Bellugi, Ed.D.
R. Thomas Collins, II, M.D.
Albert Galaburda, M.D.
Paige Kaplan, M.D.
Ronald Lacro, M.D.
Martin Levinson, M.D.
Daniel Levitin, Ph.D.
Carolyn Mervis, Ph.D.
Colleen A. Morris, M.D.
Barbara R. Pober, M.D.
Abraham Rothman, M.D.
Paul Wang, M.D.

Executive Director and Compensated Staff 

The Williams Syndrome Association has a staff of six full-time employees.  Led by the Executive Director, the staff handles all daily administration tasks, actively seeks funding sources for WSA programs, and carries out the vision of the Board of Trustees.  The Executive Director is also the primary spokesperson for the Association. 

Executive Director:  Terry Monkaba 
Office Manager:  Anne Tipton
Communications Associate:  Laurie Fundukian
Program Administrator and Bookkeeper: Jessica Cummins
Volunteer and Event Coordinator: Jennifer O'Byrne
Volunteer and Event Associate: Michele Bauer
For complete contact information, please contact the WSA National Office.

    Regional Committee Chairs (and co-chairs) 

    The WSA is divided into sixteen regional areas across the US. Each region is directed by one or more volunteer Regional Chairs and several area representatives who provide local information and support to families. 

    All Regional Committe Chairs and their contact information are listed in the WS Local Community section.