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Home » Make Connections » Connect with your Local Community

Illinois

The Williams Syndrome Association is organized into 19 regions across the United States. Illinois is divided into two regions. The majority of Illinois is in the Midwest region, with the southern portion residing in the Heartland region. Each region works to provide resource information and social and educational opportunities to its members. Volunteers are standing by in each state within the regions (parents and grandparents who can provide resources and information) to speak with new families or any families needing support. They are joined by many other volunteers who work hard to facilitate gatherings such as picnics, conferences, and fundraisers. 

Below you will find the name(s) and contact email addresses of your state's Family Support Network volunteer(s).

Blog author, Family Support Specialist:
Jenna Ottenheimer of Northbrook, Illinois
Email

Areas of focus: new diagnosis, children, cardiac issues, local resources

Local Facebook Group:
Family Support Volunteer, WSA Board:
Amy Nussbaum of Chicago, Illinois
Email

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

Local Facebook Group:
Family Support Volunteer:
Carol Patinkin of Wilmette, Illinois
Email

Area of focus: adults, local resources.

Local Facebook Group:

Clinics in IL

Ann & Robert H. Lurie Children’s Hospital of Chicago

225 E. Chicago Avenue
Chicago, Illinois 60611

Dr. Joshua Baker, Director; Sarah Jurgensmeyer, MS,CGC - Clinic Coordinator
312-227-6120
Website

Upcoming Events in IL

Anywhere, Anytime Virtual Fundraising Walk for Williams

Thu, 06/13/2024 - 12:00 am EDT to Sun, 12/01/2024 - 12:00 am EST

FSN - Complex Communicators and Feeding Challenges Group for Parents/Caregivers

Wed, 12/04/2024 - 8:00 pm EST

Mindfulness when you only have minutes (if that): Data and practical tips for rare disorder caregivers

Fri, 12/06/2024 - 2:00 pm EST

FSN - December Support Parent/Caregiver Wrap #1

Mon, 12/09/2024 - 8:00 pm EST

Adventure Seekers Jamboree: Tuesday Shenanigans! Dec 17

Tue, 12/17/2024 - 4:00 pm EST

A Family's Personal & Professional Journey with Williams Syndrome

Tue, 12/17/2024 - 6:00 pm EST

Adventure Seekers Jamboree: Thursday Hullabaloo! Dec 19

Thu, 12/19/2024 - 7:00 pm EST

FSN - December Support Parent/Caregiver Wrap #2

Mon, 12/30/2024 - 8:00 pm EST

Cruise 102: Basics and First Timers

Wed, 01/08/2025 - 8:00 pm EST

Cruise 201: Advanced Cruising

Wed, 03/05/2025 - 8:00 pm EST

Cruise 301: Last Looks and Cruising Craziness

Wed, 05/28/2025 - 8:00 pm EDT

The 2025 WSA Adventure Seekers Cruise

Sat, 06/21/2025 - 12:00 am EDT to Sat, 06/28/2025 - 12:00 am EDT

Contact us

243 Broadway Unit 9188
Newark, NJ 07104

info@williams-syndrome.org

248.244.2229
800.806.1871
248.244.2230 fax

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Position on Inclusion

The WSA upholds the following positions on inclusion. We believe that: 

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings 
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
  • high expectations should be the norm, and individuals with WS and their families should decide how they best learn, work, and enjoy social settings
  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

Funding priorities

Funding priorities pie chart.

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