for 9‑year‑olds with Williams Syndrome

Carolyn B. Mervis 1 · Caroline Greiner de Magalhães 1 · Cláudia Cardoso‑Martins 2

A report on critical data collected by Dr. Carolyn Mervis and her team at the University of Louisville, was published July 3 and we are thrilled to share the findings. Dr. Mervis is a long-time collaborator with the Williams Syndrome Association and professor of psychology, Cláudia Cardoso‑Martins PhD is a renowned expert on reading development, and Caroline Greiner de Magalhães MS is a doctoral student at the University of Louisville.

For many years it has been clear that children with WS have much better success in reading when they are taught using a systematic phonics-based curriculum. With this new peer-reviewed publication in a leading literacy journal, Dr. Mervis and her team provide data that strongly support this observation. If your school-age child is struggling with reading, they may not be receiving systematic phonics-based instruction. Provide this article to your child’s IEP team — the findings will speak for themselves.

How were the data sets collected? As described in the article, "we examined the cognitive, language, and instructional factors associated with reading ability in Williams syndrome (WS). Seventy 9-year-olds with WS completed standardized measures of real-word reading, pseudoword decoding, reading comprehension, phonological skills, listening comprehension, nonverbal reasoning, visual-spatial ability, verbal working memory, rapid naming, and vocabulary. Reading instruction method was determined from school records and interviews with parents and teachers.”

Dr. Mervis’ work is made possible by our community via WSA support and the generous participation in the research by hundreds of individuals with WS and their parents/caregivers for more than three decades. The fact that the paper was critically reviewed and then accepted for publication by the scientific journal Reading and Writing is an important milestone for research on Williams syndrome.

Dr. Mervis and her collaborators have several other papers they are preparing on the academic performance of children and adolescents with WS.

The first considers the spelling abilities of 9 to 17-year-olds with WS, the second considers the math abilities of the 9-year-olds who participated in the reading study, and the third addresses questions regarding the extent to which the reading abilities of 9 and 10-year-olds with WS can be predicted by their language and related abilities when they were 6 or 7 years old and the type of early reading instruction they received. A paper in the planning stages will consider the word-reading and reading comprehension abilities of more than one hundred 10-17-year-olds with WS with the goal of identifying factors that differentiate individuals with WS who ultimately develop functional literacy skills from those who do not. The findings from these studies will help to identify targets for intervention designed to increase the literacy and math skills of individuals with WS, helping them to reach their full potential.

Dr. Mervis says that the most rewarding part of working with children with WS and their parents is making a positive difference in the child’s life and/or the family’s life, and her work continues to do that. This paper can be used to provide schools scientific, peer-reviewed evidence of the value a child with WS receives when a systematic phonics-based reading curriculum is used.

Each summer, children ages 6-12 and teens and adults with Williams syndrome enjoy camp weeks designed especially for them, at WSA sponsored camps. The camps are busy, happy and enriching places with many activities and specialized programs. Last year's camp was virtual, but with special precautions and planning, attendees were able to join us in-person these past two weeks.

We were so pleased to have eight new families join us this year and are so proud of our six "graduates," who will be going to teen camp next year. During the Music and Enrichment Camp for teens ages 13-20, the campers spent the week composing, making art, acting, singing, dancing, and playing. From tie dye to s'mores to the slip-n-slide, there was no shortage of fun. Perhaps most importantly, the campers took this time to exercise their creative agency by expressing themselves through the creation of music and art while also re-connecting with their friends. They have been truly beautiful and groovy weeks! – Camp Director Alex Carrico

WSA sends a thank you to the 2021 camp families who came to our rescue with special donations to ensure an in-person camp experience happened despite another unprecedented summer due to the uncertainties caused by the pandemic.

On August 28, we will celebrate those with Williams syndrome and come together virtually to raise funds to support specialized WSA programs and operations. Some families will be able to walk in person at a local event. For most of us, this year’s walk will once again be virtual – one walk encompassing every square mile of the USA and beyond! You can walk, run, dance, or bike anywhere: around your neighborhood, at your favorite park – with friends, family, pets, or on your own! We look forward to seeing our members joining online on the 28th with outdoor and indoor activities.

The beauty of virtual is that everyone can do what makes them happy!

Please join us today by clicking the link below to make a donation, create a team, or register for a local walk! Every donation is greatly appreciated and will help tremendously.

Thank you for joining us!

Maeve Sturtevant lost her battle with chronic heart disease earlier this year in Maryland at the age of 21. She and her family were active members of the WSA who enjoyed attending local events in their area and three national conventions. Maeve spent some happy days at Camp Inclusion in Maryland, and the family has established a scholarship fund in her name to send a camper with Williams syndrome there; they will also donate funds from memorial donations to help send an individual with WS to one of our camps.

She was remembered at a memorial and bench dedication at Western Regional Park in Westbine, MD Monday August 2. Her family is very thankful for all who made that happen: “Now those who knew Maeve, taught her, worked with her, and all of us who loved her, will be able to walk by her bench or sit for a rest, say a prayer and remember her.” Her family (parents Mary and Mike and brothers Matthew and Michael) say that “the one word that has transcended for Maeve is ‘light’ everywhere.” They want her to be remembered and celebrated for living a great life and being their light: she was a special daughter and big sister, friend, sports fan, popular student, traveler and active camper.

Other Maeve highlights include being a super sports fan; her favorite teams included the Baltimore Ravens, and she even got to meet one of her heroes when Camp Inclusion took campers on an excursion for the day: Robert Griffin III (RG3)! She made such an impression, she was invited on the field and met him and his entire family. Her father and her brothers missed her during the NFL draft this year, as she was an enthusiastic part of their tradition of watching it together. She also joined them in being huge University of Tennessee football fans (brother Matthew is now a student there).

Maeve had open heart surgery as a child and lived with chronic heart failure. Because of her condition, she was able to visit Disney World and experience a special family vacation as a recipient of Make-A-Wish America. The Sturtevant family wants everyone to know that she was so well-loved and had a full and wonderful life. We are thankful to have been part of that, and wish her family and friends well as they remember Maeve.

WSA lost a treasured WSA camp staff member and convention volunteer in July following her valiant battle with cancer. Gretchen-Ross Malinowski was a special friend to all who knew her, and she brought incredible talent, compassion, love and a great deal of laughter to the WSA camps and convention programming for children during her six years on our staff. She touched many with her special soul, and inspired countless others through her work, musical performances and so much more.

Gretchen leaves behind her husband Dave, (whom she met at our Whispering Trials music camp – another of our incredible counselors) and two young children, along with family members and countless friends.

In tribute to her beautiful spirit and how deeply she inspired our campers, WSA will award a full camp scholarship each summer in Gretchen’s name.

The 2022 national convention committee is hard at work designing the WSA’s first hybrid convention. Convention committee members met in mid-June at our convention location – the Renaissance Hotel and Convention Center, Schaumburg, IL, and will continue to meet bi-monthly over the next year. Save the date and stay tuned for details and updates in the coming months.

When: July 12 - 16, 2022

Where: Renaissance Hotel and Convention Center, Schaumburg, IL (and some virtual offerings)

What: Four days of educational sessions for parents; specialized programming for children and adults with WS and their siblings; research participation opportunities and a whole lot of fun! Scholarships will be available and applications will open in January. We look forward to providing more details as the convention gets closer.