Proclamation sets Feb. 15 at Angelman Syndrome day in Wisconsin

On Tuesday afternoon, Joe Greget (left) read the proclamation from Gov. Tony Evers declaring Feb. 15 to be Angelman Syndrome Day. (Above) Lori, Alyssa and Mark Willner are surrounded by many of those who have helped provide services for Alyssa over the years.

Lori and Mark Willner knew something was off about their daughter Alyssa from the time she was a baby and didn’t meet expected milestones.

“The doctors told us that every child was different,” Lori said, noting that they got the same feedback from neurologists and other specialists they talked to about Alyssa’s developmental delays. It wasn’t until Alyssa was five and in school that her mother came across an article in the Wausau Daily Herald about Angelman syndrome and noted that the description matched Alyssa’s behaviors. At the time, Lori was pregnant with her daughter Hailey. They went back to their doctors who agreed and apologized for not having seen it. She later underwent genetic testing which confirmed that Alyssa has Angelman syndrome.

That was about 25 years ago, Alyssa will turn 30 this coming fall. In the years since, Willner has educated herself and worked to educate others about Angelman syndrome.

She also praised the outstanding work of the special education department and staff at Medford School District all those years who worked with the family and helped Alyssa grow and be cared for. She noted the many hours of occupational, physical and speech therapies staff have worked with Alyssa on and the effort they have put in.

“Taylor County Human Services was very helpful for us in the beginning with getting us services through Birth to 3. Kelley Isola was a lifesaver helping maneuver everything we needed to do for Alyssa and after she left the department Diane Zuleger was our social worker and helped us navigate through to adult services including guardianship. Then when we needed help to get involved with Family care or IRIS Kris McMurray helped us so much at the ADRC,” Lori said, A year ago, special education director Joseph Greget and the other members of the special education staff held a Valentine’s Day party on February 15, the day that is noted internationally as Angelman Syndrome Day.

One of the characteristics of Angelman syndrome is that the individuals who live with it have overall happy demeanors, including frequent laughter, smiling and excitability. Greget said it made it a natural to celebrate it with a Valentines Day party.

He said it also sparked the idea of asking why there was no official Angelman Syndrome Day in Wisconsin. Greget noted that the Minnesota governor had made a proclamation declaring a day there and set about contacting Wisconsin Gov. Tony Evers about getting a day declared in Wisconsin.

Greget researched the process and contacted the governor’s office to file an application to be considered. About a month ago, he got contacted by someone with Gov. Evers’ office saying a proclamation had been approved and that February 15, 2025 was proclaimed to be Angelman Syndrome Day in the state of Wisconsin.

Angelman syndrome is a rare neurogenetic spectrum disorder that affects approximately one in 15,000 people, approximately 500,000 individuals worldwide.

Greget noted that there are between 375 and 400 students in the school district who have individualized education plans (IEPs) and in his 20 years with Medford schools Alyssa is the only one with Angelman syndrome that he has worked with.

Children and adults with Angelman syndrome typically experience balance issues and motor impairment and may have debilitating seizures. They may not be able to walk or speak, and disruptive sleep also can be a serious challenge to the individual and caretakers.

Individuals with Angelman syndrome have a normal life expectancy but require continuous care and are unable to live independently.

Many individuals with Angelman syndrome have an affinity for water and take great pleasure in water-based activities like swimming and bathing.

On Tuesday, Greget presented the official signed proclamation embossed with the governor’s seal to the Willner family after reading it aloud to the gathering of teachers, aids, caregivers and friends who gathered at the SOAR (Students Open to Achieving Reality) classrooms at the Taylor County Education Center.

“We just have an amazing special education director who did this,” Lori said, praising Greget’s efforts to get the proclamation and bringing the event together.