Who we are: A group of energetic parents, concerned community leaders, and self advocates, interested in enhancing the quality of life of individuals with Down syndrome in southeastern Wisconsin.
The mission of Wisconsin Upside Down is to empower individuals with Down syndrome by providing them, their families, and the community with the best information, advocacy, and support. The goal of Wisconsin Upside Down is to offer life-long support for people with Down syndrome through programs aimed at prenatal diagnoses to issues facing adults with Down syndrome.
Wisconsin Upside Down offers support ranging from adaptive arts programs, inclusion programming for educators, prenatal support, training for medical professionals, and financial aid to the families of cancer patients, who have Down syndrome. The group offers many social opportunities for people with Down syndrome of all ages and hosts awareness events like, Kelly’s Upside Down Ball and the “Buddy Walk” each year. We offer speakers for schools and community organizations interested in learning about Down syndrome or promoting Down syndrome awareness.
Robbin Thomas Lyons, president of Wisconsin Upside Down has been an advocate for individuals with disabilities for many years, beginning with the birth of her daughter, Kelly, who has Down syndrome. Robbin began advocating for people with disabilities during her daughter Kelly’s battle with cancer. When she could find no support available for families facing a dual diagnoses of Down syndrome and cancer, she started Kelly’s Upside Down Ball. The event raises money to help the families of the 1 in 100 children with Down syndrome, who are diagnosed with leukemia each year. Since 2002, she has directed eight charity balls and helped countless families in Indiana and Wisconsin as well as providing on-line support to families from all across the United States.
Robbin is an active member of The National Down Syndrome Society (NDSS) and National Down Syndrome Congress (NDSC), as well as, Down Syndrome Affiliates in Action (DSAIA), Best Buddies, and Down Syndrome Indiana. Lyons previously served as the Vice President of the Down Syndrome Association of Wisconsin and is an active music minister at St. Joan of Arc Catholic Church in Nashota. She serves on committees for Children’s Hospital of Wisconsin, the Lake Country Women’s Club, Lake Country Relay For Life and the Hartland North PTO. She has been awarded the DIS Star award and the George Watts Civic Heroism Award for her work with Down Syndrome Advocacy. The most important group that Robbin belongs to is her family. She is married to Dana Lyons and she has three children, Reed, Regan and Kelly. She considers them to be her greatest commitment, greatest challenge and greatest gift.
Amy Elfner, treasurer, is also the mom of a child with Down syndrome. Amy helped introduce Robbin to other moms in the area, through an on-line list-serve of moms, who have children with Down syndrome. Amy is founder of the group, even though at the time she started it, she did not have a child with Down syndrome. She worked as an advocate for the Down syndrome community long before she was blessed with her son, Sam. She is also mom to Jake, age 11, Emily, age 10 and wife to Eric.
Amy sits on the boards of several non-profit organizations. She brings the kind of financial and organizational skills that are crucial to an organization like the Wisconsin Upside Down. She is driven to help individuals with Down syndrome achieve successful, fulfilling lives.
Other board are members are:
Diane Moede, board secretary is an educator, Diane is also mom to two boys including one who has Down syndrome. Besides normal secretarial duties, she is the acting editor for Jot It Down, the official newsletter of Wisconsin Upside Down.
Marlene Millevolte, the Inclusion Chair, works tirelessly to help adults with Down syndrome transition into the community. Marlene is a talented artist, who has developed programs of adaptive art that make hand sculpting possible for people with a variety of special needs. Marlene works closely with our self advocates to create programs that they can enjoy and be empowered by.
Tracy Boden, the self advocate chair, brings important first hand experience to the board. Tracy is a senior at Arrowhead High School. She works as an intern at several Hartland businesses. Tracy has Down syndrome.
Heidi Conrad, member at large, has been involved since the beginning. Employed by Foundations Bank in Pewaukee, she helped find us a home for meetings as well as our banking. Heidi helps bring important community perspective to our board.
Teryl O’Grady, occupational therapist and mom to a teenage daughter with Down syndrome. Teryl is the director of TASK (Talk About Special Kids), a Waukesha based parent support group for parents of children with Down syndrome.
