ArtWorks Brings Award-Winning Scrapbook Workshop to CHARGE Syndrome Foundation Conference
By Drew Milne
The 16th semi-annual CHARGE Syndrome Foundation Conference took place from June 24 through June 27, 2025 in Phoenix. Representing the Sonoran Center, ArtWorks director Dr. Yumi Shirai and Community Advisory Council Co-chair Pavleena “Paavi” Madhivanan facilitated a version of ArtWorks’ Person-Centered Scrapbook Making Workshop, Creative Cafe. This workshop was designed to help people with intellectual and/or developmental disabilities communicate their wants, needs, and inner lives. It also helps build confidence, initiative, and independence. For this workshop, ArtWorks was awarded The John A. Hartford Foundation 2024 Business Innovation Runner-Up Award.
The CHARGE Syndrome Foundation is a charitable organization with the goals of promoting awareness of CHARGE Syndrome, contributing to cutting-edge research, and building networks of partnership and support.
“What is CHARGE Syndrome?” Paavi asked.
“CHARGE syndrome is a recognizable genetic syndrome with known patterns of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child,” the CHARGE Syndrome Foundation website reads. “Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.”
The CHARGE Syndrome Foundation Conference is a semi-annual conference dedicated to bringing the CHARGE Syndrome Foundation’s community of advocates, self-advocates, professionals, providers, and supporters together. It is an opportunity to share best practices, resources, and techniques - which is why the Foundation reached out to ArtWorks.
“They reached out to us saying they were having a conference in Phoenix,” Dr. Shirai said. “We thought [to bring] the scrapbook format, the one we got the Hartford Foundation award for. During the conference evening activity time, we shared this format for participants to capture their conference experiences in a fun and creative way . The format includes three steps: One is asking ‘why we are here together,’ in this case the CHARGE conference. Second, what kind of things they learned or discovered through this conference. Then, [third] they summarized their experiences and creatively expressed themselves in the scrapbook page.”
Participants could use a variety of materials for their scrapbook page. They could write or draw using colored pencils and pens, or they could cut and paste with colored and designed papers, logos, stickers that are related to the Arizona landscape or photos the participants themselves took at the conference.
“They already planned to have a photo booth, so that really worked well, because people who participated in the conference could have a picture taken, and they could use that picture and insert it into the scrapbook.” Shirai explained. “We were hosting there with the poster, talking about the scrapbook process, and then we also had materials. Papers, decorative papers, stickers, different letters, glues and scissors that they can use. They also had a worksheet with several prompting questions, like “What roles did you play in the conference (advocate, leader, friend, presenter, learner)?” “Who did you meet? How many friends did you make?” “What was your favorite part of the conference?” … where they could put their answers to the questions. Then, they could cut and paste their answers into a scrapbook page, and many of them came back and showed us how they made it. Then they could hang their scrapbook pages in our backdrop, and take pictures of that as well.”
“It’s story gathering. It’s an expressive form,” Dr. Shirai added. “There’s not one way of making a scrapbook, here are multiple different ways to connect with others. For example, one person was not much interested in drawing, but he collected the material with the lettered stickers, and then he could spell it out with things that he was excited about and share these with us.”
Paavleena Madhivanan, Sonoran Center Project Aide and Community Advisory Council Co-chair, was also present. She made her own scrapbook page and helped facilitate the workshop - talking with the conference participants, welcoming them and passing out scrapbook materials, and also described what the Sonoran Center does.
“I was surprised - there's a lot of things that go into this scrap book, even different designs of paper that I didn't know existed,” Pavleena said. “It’s all connected. It helped answer the questions [Dr. Shirai] gave me, and I got to experiment with how to do it on my own. I can feel like I’m also contributing.”
Paavi also appreciated that the conference presented an opportunity to meet new people from many different walks of life.
Paavi and Dr. Shirai agreed that they were proud to be a part of this conference.
“Although they've been going on for a while with the conference activities, the organizers and volunteers are very cheerful and uplifting in the way that they wanted to make friends and share the resources,” Dr. Shiriai. “It was a very energizing event for us.” Paavi said “It was motivating me and I am very grateful to be part of it”
ArtWorks will host another scrapbooking workshop, open to the public, at the upcoming Tucson Meet Yourself on October 17 - 19, 2025. ArtWorks is also open to collaborating with other organizations to host their own version of the workshop, tailored to their organizational needs. For more information, contact Yumi Shirai at yumish@arizona.edu.
The CHARGE Syndrome Conference will return in Summer 2027.