The community boards that unite us: A circle of friends, visitors, and constituent advisors

By Emily Leclerc, Waisman Science Writer

Abigail Tessman at the Waisman Whirl
Abigail Tessman crossing the finish line at the 2022 Waisman Whirl

A place such as the Waisman Center needs help to not only function at its highest level but to also ensure the needs of the community it serves are being met. This requires constant feedback, assistance, and support from various community partners. So, the Waisman Center built three community boards to enable longstanding engaging relationships between the center and the community. They support two-way communication that ensures the symbiotic relationship between the Waisman Center and the community it serves.

The Friends of the Waisman Center, the Constituent Advisory Committee, and a board of visitors provide touch points to the broader community, build connections with individuals, organizations and businesses, and help Waisman continuously improve on how they can better serve the intellectual and developmental disabilities community.

A Friendly Helping Hand

Linda Berman - Whirl
Linda and Nile Berman crossing the finish line at the 2022 Waisman Whirl

The Friends of the Waisman Center, a 501(c)(3) non-profit organization, was founded in 1975 by Harvey A. Stevens. Stevens was the first program administrator of the Waisman Center. He had a long and distinguished career working with and helping individuals with disabilities. Stevens’ original conception for the Friends was to pull together a group of people that could help establish the Waisman Center in the community, represent center and university interests to the state legislature, support activities and projects throughout the center, and raise funds. He also established an art collection at the Waisman Center to showcase art by individuals with disabilities. The Friends today continue to operate under those goals and that has allowed the board to have a substantive impact on the center.

The Friends is led by a board of directors that includes business and community members, faculty, staff, and family members. “We on the board are volunteers that reach out to the community in order to raise awareness and funds to further the Waisman Center’s mission of education and research about human development, developmental disabilities, and neurodegenerative diseases,” says Linda Berman, current secretary and board member. “Each of us on the Friends board has a unique perspective and are willing to give time and creativity to enhance the continued success of the Waisman Center.”

Each year, the Friends sponsor several events that provide ways for Waisman to give back to the community and for the community to participate in the center’s activities. This includes an annual golf benefit, a spring benefit, a 1k/5k run, walk, and roll and a children’s theatre series. The Waisman Center Children’s Theatre was initiated in 1985, and featured educational artistic theatrical programming for young children that included dance, singing groups, theatrical performances, and environmental education activities in Waisman’s accessible auditorium. The series included monthly performances throughout the academic year up until the pandemic forced it into hiatus.

Each of these outreach events also doubles as a fundraiser. They connect hundreds of people to the center each year and help increase awareness and support.” “I love working with Waisman’s staff and knowing that the funds and the awareness raised in the community are helping the Waisman Center thrive,” Berman says.

Tim Muldowney at the Golf Benefit
Tim Muldowney (left) and his golf team at the 2023 Waisman Golf Benefit

The Friends use the proceeds from these events to help support a broad range of projects and goals across the center to address areas of greatest need. The Friends also provides small grants to researchers and students, support the Day with the Experts outreach series, launched the Waisman Early Childhood Program (WECP) Scholarship Fund, underwrote the cost of the Discovery Garden and the clinics and auditorium revitalization projects. They provide annual support for the Wiley Seminar Series, sponsor the Harvey A. Stevens International Collection of Art by People with Developmental Disabilities, and other key initiatives identified by the center director. “I’ve always appreciated that the Friends can raise some money and awareness of need in the community but also raise money for shorter term but unmet needs of the center,” says Tim Muldowney, a former Friends board member and longtime donor. “If there is a more immediate need that can’t be met by grant funding, the Friends board has the ability in its fundraising efforts to fill in those cracks.”

Creating Community Input

Maria Nogueron
Maria Nogueron receiving a Wisconsin Board for People with Developmental Disabilities’ Diehard Award for her advocacy work in 2021

In the early nineties, the Waisman Center’s University Center for Excellence in Developmental Disabilities (UCEDD) recognized the need for feedback from the community served. The UCEDD works directly with individuals with disabilities, family members, state and local government agencies, and community providers to provide training, technical assistance, service, research, and information sharing.  In order to best serve the disability community, the UCEDD formed the Constituent Advisory Committee (CAC) in 1994. This proved to be an astute foresight, as of 2000, the Developmental Disabilities Assistance and Bill of Rights Act made having a consumer advisory committee a requirement for all UCEDDs in each state in order to receive core funding.

The CAC is comprised of family members of individuals with disabilities, self-advocates, a Wisconsin Leadership Education in Neurodevelopmental and Related Diseases (LEND) trainee, a representative of Disability Rights Wisconsin, a representative of the Wisconsin Board for People with Developmental Disabilities, and a representative of a statewide self-advocacy organization. They work directly with the UCEDD’s leadership to provide insight into how the center can best serve and represent those supported and affected by the UCEDD’s programs. “The CAC provides an important extra set of eyes to overlook projects and see things that could be better for the disability community,” says Abigail Tessman, the current CAC president, a former LEND trainee, and an individual with cerebral palsy.

Nancy Alar
Nancy Alar

They review research goals, outreach activities, and clinical services that are part of the UCEDD’s current five-year work plan to see if they align with the interests of the disability community. “The CAC is very important to Waisman because we not only represent the disability community to the Waisman Center but we are also the ambassadors of the research and Waisman to the community. We are a two-way bridge,” says Maria Nogueron, former CAC president and mother of a daughter with Down syndrome.

The CAC provides a direct avenue for the disability community to work with the Waisman Center to help ensure their needs are being met. “You really need community input. You really need people who are on the ground, doing the work, telling people at Waisman what is actually happening in the real world,” says Nancy Alar, longtime CAC member and mother of a son with autism. “Waisman is full of really wonderful professionals and academic people but most of them are not out dealing with all of the challenges that come with disabilities of all kinds. That’s the purpose of this group and the fact that we are listened to by the Waisman Center is very important.”

Leann DaWalt and son at the Waisman Whirl
Leann Dawalt crossing the finish line with her son at the 2022 Waisman Whirl

Leann DaWalt, Waisman Center UCEDD director and Waisman investigator, relies on the advice and support that the CAC provides to the UCEDD. The board is crucial to the efforts of the UCEDD and greatly impacts the work that they do.The constitute advisory committee is central to the work of the UCEDD. The CAC provides the UCEDD with timely, ‘on the ground’ information on the needs of people with IDD and their families, including barriers and challenges that individuals are experiencing. They also give guidance on what types of strategies might be most effective in addressing these needs. The CAC also gives feedback on how to best share information in accessible ways,” DaWalt says. “We are very grateful to have such a strong, engaged, and insightful CAC at the Waisman Center!”

Visiting with a Purpose

Tim Muldowney at the Golf Benefit
Tim Muldowney (left) and his golf team at the 2023 Waisman Golf Benefit

The last community board to come together is the board of visitors (BOV). Founded in 1996 by Judith Ward, current BOV member and former executive associate director of the Waisman Center and Terry Dolan, then-director of Waisman, the BOV was designed to build strategic relationships with the business community, strengthen relationships with the private sector, create an advocacy network, and guide major fundraising efforts. “It is a tried and true advisory board and it is amazing to see the faculty and staff put plans into action, including the Waisman Biomanufacturing facility, which is a real hidden gem for the university” says Paul Weiss, a long-time BOV member.

Waisman’s BOV is comprised of local business leaders and experts in their respective fields who have dedicated time and resources to Waisman to assist the center in running smoothly, efficiently, and effectively. Many of the BOV members have experience in executive leadership positions and are able to provide their expertise and advice to Waisman’s leadership on an array of topics. Throughout the years, the BOV has provided support for the center’s expansion in 2001, insights into creating cutting-edge research spaces, and advice on how to organize and market the center to expand its impact and success.

Judith Ward
Judith Ward

“The BOV has become a valued resource and partner to the center’s leadership because its members are knowledgeable about the impact of Waisman programs and stand ready, when asked, to share their expertise and perspective,” says Judith Ward.

The relationships and affiliations that the BOV members bring to Waisman are highly unique, offer executive-level perspectives, and afford additional avenues for information exchange. “The members of the board of visitors provide strategic counsel and help cultivate important partnerships in the community. I rely on their experience and expertise and often use them as a touch point on key issues,” says Qiang Chang, PhD, director of the Waisman Center.

Each board does so much more than just create a bridge between the Waisman Center and the community. Much of what Waisman has been able to accomplish over the last 50 years has direct relationships to the boards and their participation in the center. “All of the community-based boards at the Waisman Center play an integral role in our success,” says Chang. “I am grateful for their support, outreach, and advice. Their contributions have made a significant impact on the center and the community we serve.”

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