Board

The Williams Syndrome Association is governed by a volunteer Board of Trustees. The Board provides organizational oversight and works closely with staff and volunteers to establish the vision and carry out the mission of the WSA.

There are 11 - 15 trustees on the Board in any given year. Trustees are elected by the membership for three-year terms and may seek re-election to one additional term. Nominations for open seats are accepted beginning each July, with elections taking place in late fall. Those interested in holding a seat on the Board are often nominated by members of the nominating committee, but they may also self-nominate. Notices regarding upcoming nomination procedures and timelines are announced via the eNewsletter.

The Board of Trustees hold primary meetings twice each year in April and November, and conduct much of their work through committees. Committees are established by the Board to assist staff in accordance with strategic goals and are comprised of Board members, WS experts and members of the general membership depending on expertise required. Standing committees of the Board include: Executive, Finance, and Research and Development. Current strategic workgroups include: Diversity, Sibling support, and WS Ambassadors (adults with WS).

The WSA bylaws are available for review at any time by request to the national office. WSA 990s are posted annually on Guidestar.

Bill Palmer

President

William Palmer (Bill) is a semi-retired engineer, and has worked for several nonprofit organizations in the building/infrastructure design and construction industry. He was executive director of two nonprofits and then spent 20 years as editorial director of a group of magazines and websites for construction contractors. Bill has also served on several volunteer boards, including the Williams Syndrome Association board of trustees, where he served and was president in the late 1990's during a critical growth period. During his term as president of his local library board, he helped raise several million dollars for a new library. Bill and his wife, Wynne live in Colorado with their 31-year-old daughter Autumn, who has WS.

Family Support Network area of focus: adults

Rebekah Pagis

Vice President

Rebekah Pagis is the Chief Growth Officer for North America at WPP, a global communications, advertising, public relations, technology, and commerce holding company. She is an empathetic leader who believes strongly in the power of creativity for the betterment of our world. Rebekah’s fresh take on building inclusive environments, based on psychological safety, a new values exchange, and resiliency has resulted in impressive results and growth for the brands and clients with which she has worked. Rebekah is an advocate for individuals with disabilities, and has volunteered for several years with the WSA, serving as a walk coordinator, and helping with philanthropic efforts. Rebekah lives just outside New York City where she serves on the Student Support Committee of the Mamaroneck School District where she lives with her husband and son Joachim, who has Williams syndrome.

Meredith Greene, Esq

Treasurer

Meredith Greene, Esq. is a partner at the law firm, Day Pitney, where she practices special needs planning in the Boston office. Meredith is counsel to families and individuals for estate planning, with a primary focus on special needs planning, estate planning, guardianship & alternatives, conservatorship, adult services advocacy, and government benefits advocacy. Meredith is a regular presenter at Williams Syndrome Association conferences and the national convention. Meredith and her husband Tom live in Sudbury, MA with their four children: Connor (WS), Owen, Julianne, and Myles.

Janetricks C. Okeyo, PhD

Secretary

Dr. Jenty Okeyo is a research scientist who has worked in the biopharmaceutical industry in progressive leadership roles for the past 10 years. She has substantial experience in building medical affairs and medical communications capabilities, most recently with a company focused on the development of therapies for rare disorders. She is currently part of a medical leadership team that drives medical affairs strategy and stakeholder engagement, data/educational gap identification, evidence generation, and scientific communications/publications dissemination to targeted healthcare and patient communities.

Jenty, who was born and raised in Kenya, moved to the United States in her 20s to pursue graduate studies at the University of Florida, graduating in 2009 with an MSc. in Pharmaceutical Sciences and a PhD in Chemistry. She also completed a post-doctoral training fellowship in Physiology at the University of Alabama, school of medicine in Birmingham, AL.

After living in the Philadelphia suburbs for 10 years, Jenty and her husband, Dr. George Okeyo, recently (in the summer of 2022) relocated their family to Milton, GA, a northern suburb of Atlanta. They have 3 daughters, Lavender, Subira, and their youngest, Alyssa who is 12 and was diagnosed with Williams syndrome at age 9. Jenty and George are dedicated to raising WS awareness, educating, and advocating for disability inclusion and acceptance in the community. Jenty is thrilled to join the WSA Board of Trustees, where she hopes to leverage her professional and personal experiences to positively impact the lives of individuals with WS and other disabilities, especially in underserved populations.

Lisette Engel

Lisette Orellana Engel (she/her/ella) serves as Vice President of Policy and Systems Change for Justice and Joy National Collaborative (formerly National Crittenton), where she leads the policy agenda for the organization, focusing on issues impacting girls and gender-expansive girls of color. Locally, she advocates for her community, with a special interest in immigration issues and families with children with special needs. She volunteers on various committees and boards and currently sits on the Montgomery County Community Action Board and the Latino Student Achievement Action Group. Lisette lives in Germantown, MD, with her husband and her kids, Gina (21) and Jeremy (20 WS).

Marie Murphy Gleason, MD

Marie Gleason, MD a first-generation American born to Irish immigrants in 1950s New York, experienced a childhood in a city filled with limitless learning opportunities and a deep sense of responsibility for leading a meaningful life. She was the first college attendee in her family, graduating from St. John’s University and later pursuing medical studies at New York University. With a career spanning from 1977 to 2020 as a pediatric cardiologist, Gleason contributed to advances in clinical care and research, notably in Williams syndrome through the multidisciplinary clinic for WS at Children’s Hospital of Philadelphia (CHOP). Over the decades, Marie has seen gradual improvement in the recognition of WS in the medical community, and much of this has been due to the ardent efforts of families and the WSA to raise awareness. Marie understands the struggles that families face as their children grow into adulthood and need to lead safe and productive lives.

In her retirement, she values time with her husband of nearly 40 years, two adult sons, and three grandchildren. Gleason enjoys reading, cooking, and traveling while also participating in local volunteer activities in the Philadelphia suburbs.

Ellen Hoch

Ellen Hoch is currently at KKR, a global alternative investment firm, focused on talent acquisition. Prior to joining KKR, Ellen was a partner at a retained executive search boutique, where she spent 16 years recruiting talent in financial services for leading private equity, hedge fund, and investment bank brands. Previously, she was an equity research analyst at Citigroup and a management consultant at PricewaterhouseCoopers. Ellen and her husband Andrew met while in college at the University of Michigan. They live in Westfield, NJ, with their 3 children Morgan, Ryan (WS), and Spencer.

Clancey Hopper

Clancey Hopper is 30-year-old with Williams syndrome. She lives independently in Nashville, Tennessee in her own apartment. Clancey is employed by United Healthcare where she serves as a clinical administrative coordinator. She is also an advocate dedicated to changing the perceptions of those people with developmental disabilities and currently serves on the Tennessee Council on Developmental Disabilities. Clancey is honored and humbled by the opportunity to serve on the WSA Board of Trustees.

Brendan LeMieux

Brendan LeMieux has Williams syndrome. He is 33 years old (diagnosed at age 12) and lives in CT. Following graduation from Daniel Hand high school in 2006, Brendan attended the Berkshire Hills Music Academy in MA and the Neighborhood Music School in New Haven, CT. Brendan is an accomplished musician, playing both drums and bass guitar and has been a member of several accomplished bands including the Girls from Ruby Falls (winner of the Best New Band award and Best Country/Americana Band - 2016 Connecticut Music Awards); Kandoo Band (winners of the Best Buddies International first annual talent contest, and The Lost Tribe, Rock Shabat Band in Norwalk, CT. Brendan was also a member of the News team and band on MTV’s “How’s Your News” reality television series. Brendan is a past Best Buddies Ambassador, and a frequent public speaker and disabilities advocate.

Aaron Lombard

Aaron Lombard is a native of New Orleans, LA, and has a 45 year old sister, Courtney, with Williams syndrome. Courtney received a diagnosis around 4 or 5 years old, but with Williams syndrome being in its infancy in regards to recognition as a disability, resources and information were limited so she and her family are only recent members of the Williams Syndrome Association, discovering the WSA in 2020 during the pandemic. Aaron has worked in Optical Sales and Marketing with Oakley for 15 years, managing a territory of private practices throughout the southwest region. He also has extensive experience in Community Relations and Sports Marketing, having worked in minor league baseball for the Houston Astros and Milwaukee Brewers. He is dedicated to making an impact by putting WSA at the forefront of any conversation he has in supporting his sister while spreading Williams syndrome awareness wherever he goes. He is grateful for the information and community the WSA has brought him and his family in this short time and is honored to be an asset to its growth and impact by serving on the Board of Trustees. Aaron has lived in Phoenix, AZ for 20+ years and has 2 children, Laekyn (7) and Declan (5).

Gianna Morello

Gianna is 25 years old and has Williams syndrome. She resides in New Jersey. After graduating from high school in 2016, she attended Centenary University, where she graduated with an associate’s degree in Liberal Arts. She went on to Ramapo College of New Jersey, where she graduated with a bachelor’s degree in Music Performance. She has spoken at Ad Week in NYC multiple times as an advocate for Creative Spirit, whose mission is to provide employment opportunities for individuals with intellectual, developmental, and learning disabilities. She loves music and is an avid drummer who has performed at Williams Syndrome and Creative Spirit events. She is thrilled to be able to share her unique perspectives as a member of the WSA Board of Trustees.

Amy Nussbaum

Amy Nussbaum has a BA from University of Michigan in music education, and has worked as a music teacher in elementary and middle schools. Following college graduation, she joined the Peace Corps and lived in Namibia for two years where her service was primarily dedicated to grant writing and education for an elementary school in a rural community. She also established a community garden, kindergarten program, school playground, the school’s first library, and resources for HIV/AIDS prevention; she taught English, teacher development, computer, and HIV/AIDS prevention classes to both children and adults. While in the public schools, she was fortunate to teach every student in the schools, and frequently differentiated lesson plans and assessments for particular students, attending weekly team meetings with fellow staff members to solve student challenges, and participating in IEP meetings as a teacher representative. She has fundraised and served on the board for a nonprofit in Chicago, where she lives with her husband and four children, including daughter Libi, who has WS.

Family Support Network areas of focus: new diagnosis, children

Ben Samelson-Jones, MD, PhD

Ben Samelson-Jones, MD, PhD, is Assistant Professor of Pediatrics at the University of Pennsylvania and a pediatric hematologist at The Children's Hospital of Philadelphia (CHOP). He is the Associate Director of the Clinical In Vivo Gene Therapy program at CHOP, a member of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics, and faculty for Gene Therapy and Vaccine (GTV) Graduate Program.

Ben is a principal investigator for clinical gene therapy trials and runs a translational laboratory supported by the National Institute of Health, the National Hemophilia Foundation, and sponsored research agreements with industry partners. He is a member of the Scientific Advisory Boards for several biotech companies and is a member of the Translational Science Committee of the American Society for Cell and Gene Therapy. He lives outside of Philadelphia with his wife Melissa and their four children, including daughter Rose, who has WS.

Danielle Shockey

Danielle Shockey is the CEO of Girl Scouts of Central Indiana. A Girl Scout alum, her experience serving Indiana’s youth spans a career of 20 years, including as a Deputy Superintendent, College Dean, School Principal, and Classroom Teacher. Danielle serves as Board Chair for Every Girl Can STEM, a non-profit focused on STEM and equitable opportunities for girls, and is an active member of the Village of MericiBoard, which focuses on independent living opportunities for adults with disabilities in Indiana. Danielle and her husband Ed have four daughters: Taylor (23), Riley (20), Evie (16), and Alexandra (19 WS). Their family is active in supporting community causes, including mental health, suicide, and WS.

Kelly Wei, PhD

Kelly Wei, PhD is Vice President of New Therapies at Medtronic. Based in Minneapolis, she has 16 years of experience with Fortune-500 medical technology companies. She is a Frontiers of Engineering Alumni from the National Academy of Engineering and holds 30 patents. Kelly received her PhD in Electrical Engineering and MS in Computer and Systems Engineering from Rensselaer Polytechnic Institute, MS in Biology and Physiology from University of Minnesota Medical School, and BS in Electrical Engineering from Huazhong University of Science and Technology in China.