Our Mission
Building a community of families and professionals around the world to promote awareness, understanding, support, and treatment of people affected by XLID98.
About the XLID98 foundation
The goal of the XLID98 Foundation is to support families of individuals affected by XLID98 (also known as KIAA2022/NEXMIF/MRX98) worldwide.
Our hope is to establish a supportive community, educate families, foster collaborations with physicians, scientists and other patient advocacy organizations. We will also be raising awareness and supporting medical research, helping children diagnosed with this rare condition get the treatment they need to improve their quality of life.
The XLID98 Foundation is an internationally focused charity working to improve the lives of families affected by XLID98 world wide. We received status as a registered charity in Canada in October 2023. We can accept international donations, but can only provide tax receipts to Canadian Citizens at this time.”
Board of directors
Kirsti Bakker
XLID98 Foundation President
Kirsti’s love for her son Liam drove her to start an international Facebook group and then a foundation for XLID98. Her drive for action and ability to connect people helps her be an inspiring leader for the organization.
In addition to being President of the Board, and conducting many local fundraisers for the cause, Kirsti has a very active home, work and social life in Brockville, Ontario, Canada. Together with her husband Mike, she has 4 children, 3 cats and 2 dogs. She was a foster parent for over 20 years, including fostering children from Chernobyl every summer for over 10 years. During the school year, she is an Educational Assistant and private Music Teacher (ORMTA). In the summertime, she and her husband love to go camping in Nova Scotia, Canada, going on hikes and exploring waterfalls.
Johanna Freelan
XLID98 Foundation Vice President
Johanna discovered the world of XLID98 when her daughter Taylor was diagnosed at the age of four. A graduate of Ryerson University’s School of Interior Design, Johanna brings a spirit of creativity and passion to the Foundation. She is excited to bring awareness to this lesser-known genetic condition through fundraising initiatives and education.
Johanna was born in Buenos Aires, Argentina and moved to Toronto, Canada in 2001. In addition to being a full-time caregiver to Taylor, Johanna and her husband, Brad, have two hockey-loving twin daughters who keep them very busy.
Some of Johanna’s favourite things to do are camping, cooking & eating great food, biking, hiking, pottery and spending time with her extended family.
Sarah Jane Johnson
XLID98 Foundation Secretary
Sarah’s daughter, Leah, was diagnosed with autism and intellectual disability at age four, and epilepsy at age 6. When Leah was 13, genetic testing had advanced, and she was diagnosed with XLID98. The day Leah was diagnosed, Sarah was introduced to Kirsti Bakker, Johanna Freelan, and a Facebook group of other families with children with the same condition. From these introductions came the XLID98 Foundation.
While parenting Leah and helping run the Foundation could both be full-time jobs, Sarah’s actual day job is running a market research company with her husband, Jeff Hecker. She uses her marketing skills to help set the strategy for the foundation and her writing skills to produce fundraising communications. Sarah lives in Toronto, Ontario, Canada, with her husband Jeff, her daughter Leah, and a very lively cat named Lenny. She lives to travel the world and has passed that passion onto Leah.
Alison Howard
XLID98 Foundation Treasurer
Alison faced a life-changing moment when her daughter Sidney was diagnosed with XLID98 in 2018. Sidney being the third known case in Canada brought a mix of emotions, but Alison was determined to turn this knowledge into power to ensure Sidney’s best possible quality of life. Discovering the XLID98 Facebook group connected her with others sharing the same goal, sparking the creation of the Foundation. As a designated accountant, Alison provides crucial financial oversight and monitoring, aiding the Foundation’s mission to advance understanding and treatment for XLID98.
Alison has previously served on numerous grassroots boards, using her experience to ensure the XLID98 Board meets its governance responsibilities. Managing a nationwide team in her professional life has equipped her with the skills to navigate the challenges of working with a diverse, Canada-wide group. Outside of her advocacy work, Alison enjoys travelling with her family and making music with the Delta Music Makers in British Columbia, Canada..
Dr. Tammy Dukewich
Director of Research & Education
Tammy is the legal guardian of Austin, who was diagnosed with XLID98 when he was about 4 years old. She describes him as her BFF. As a licensed Psychologist in the state of Tennessee, She uses her skills as a longitudinal researcher to guide the development and implementation of the only XLID98-specific international data registry, as well as bringing together current information for researchers and families.
After graduating from the University of Notre Dame with a Ph.D. in Psychology, Tammy taught at several colleges and conducted research and clinical practice at Vanderbilt University. Currently, Tammy runs a small psychological practice that serves children, families and adults. In her spare time, she loves being outside with Austin, playing in the pool during the summer months and pulling Austin around on his sled when it happens to snow in Tennessee. Although originally from Alberta Canada, Tammy lives with her family near Nashville, Tennessee, USA..
