Background
CDKL5 Canada is a registered charitable corporation founded to pursue research into finding a CURE for CDKL5 disorder. This is a volunteer working Board.
CDKL5 Canada Board of Directors
President
Teresa is a dedicated registered nurse and a passionate advocate for the special needs community. Her journey began with a personal connection when her daughter, Elizabeth, was diagnosed with CDKL5 at age 12. This experience led Teresa to become deeply involved with CDKL5 Canada, where she has served on the board for many years.
Teresa’s commitment to the cause is evident in her long-standing leadership roles, including her tenure as Vice President since 2022, and previously as Outreach Director. Beyond her work with CDKL5 Canada, she actively contributes to other organizations, including the Starlight Parent Planning Board and has previously served on the Family Support for Children with Disabilities (FSCD) and the Alberta Children’s Hospital Parent Board. Teresa’s professional expertise and personal experience make her a compassionate and knowledgeable voice for families navigating the challenges of raising a child with special needs.
Past President
Natalie Ladly is mom to Reese, Cullen, and Brynn. Brynn was diagnosed with CDD in 2016. Natalie started fundraising shortly after Brynn’s diagnosis and was blown away by the support and generosity of her community. She discovered that despite not having control of the diagnosis or symptoms, she could still make a difference in the lives of Brynn and other families with the same condition.
Natalie joined the CDKL5 Canada Board in 2017 as the Fundraising Chair, and she was the Secretary of the CDKL5 Alliance from 2019-2022. She took on the role as President for CDKL5 Canada in August 2022.
Treasurer
Alison lives in Thornbury, Ontario and joined the CDKL5 Canada Board in August 2022 as the Treasurer. Alison has volunteered on many committees in the past, including Habitat for Humanity Georgian Bay and Sail For Hope – Georgian Bay Canadian Cancer chapter. She has also been a volunteer for her local yacht club serving as Secretary for multiple years and the Treasurer for 4 years.
Alison is married with two grown children and loves being a Grammie to her granddaughter.
Secretary
Ange Maisano is passionate about helping families and young children. For the past 20 years, she has been working as a Leader in the Child Care Industry. She has experience working on many boards and advocacy groups. She currently works as a Director in Child Care and loves helping families and children reach their fullest potential.
Ange is the mother to Alivya (5) who was diagnosed with CDKL5 at 18 months. Being a part of the CDKL5 Community and raising awareness is something she looks forward to doing.
Fundraising Chair
Jill Copithorne’s journey with CDKL5 began in January 2022 when her daughter Madison was diagnosed with the condition at just eight months old. Jill resides within Durham Region, Ontario with her husband, son and daughter. Her personal experience with CDKL5 has fueled her desire to make a difference in the lives of those affected by this rare disease.
After her daughter’s diagnosis, she quickly realized there was a lack of awareness and although research has come a long way in recent years, there was still so much to be done. She decided to take action and join CDKL5 Canada. She has shared her personal story on social media, bringing attention to the need for more research and support for families living with CDKL5.
Director
Christine Turgeon is a proud mother of two daughters, Anabelle and Amélia. She and her husband were introduced to the world of CDD when their second daughter started experiencing seizures at just 4.5 weeks old. Since then, they have found unimaginable strength and determination to advocate for Amélia and support her in every possible way.
She has a passion for bringing people together and hopes to use her 11 years of experience in the legal industry to help advance the mission and goals of CDKL5 Canada.
Director
Marija Kalabic has been on the Board of CDKL5 Canada since its conception. Her first experience with CDKL5 disorder was through a family she worked for as a therapist for their child. Later this child was diagnosed with CDKL5. Marija became very interested and passionate about helping CDKL5 research progress and was delighted to accept a role as a board member.
Marija has experience in working in research, specifically in Neuromechanics and Clinical Trials for Rare Disorders
Director
Jordan Stead is a geophysicist, artist, and advocate with over 17 years of experience in the energy industry. She is also the mother of three children: Kaia, Avery, and Ebba.
Ebba began experiencing seizures within the first few weeks of life and was diagnosed with CDKL5 Deficiency Disorder at seven months old. This life-changing diagnosis sparked Jordan’s determination to understand the condition, connect with the CDKL5 community, and actively fundraise to support research aimed at finding a cure.
Ebba’s strength and resilience continue to inspire Jordan’s advocacy. With the unwavering support of a wide network of family and friends, she is committed to improving the lives of CDKL5 patients and their families.
Director
Suchi Jobanputra was first introduced to CDKL5 Deficiency Disorder when her son, Rohan, was diagnosed at 6 months old. Despite the challenging journey, Suchi and her husband have found strength and inspiration in their sweet son, generous family, and supportive community. Suchi is honored to contribute to the valuable work accomplished by CDKL5 Canada.
Suchi is a pediatric Speech-Language Pathologist and researcher, with a strong passion for family support and advocacy. She has previously participated in the ministry-appointed Provincial Parent Advisory Committee for FSCD (Family Supports for Children with Disabilities) in Alberta.
Administration
Valerie lives in London Ontario with her husband Barry of 38 years. She has two grown sons and recently became a grandmother! Valerie works with CDKL5 Canada as support to the volunteer Board members, to assist them in their efforts to support families, research, fundraising and awareness. She was introduced to CDKL5 Canada through Sangeeta, where they worked together on the Board for Ontario Rett Syndrome Association.
Valerie is passionate in her dedication to these volunteer Boards, and admires their desire to make a difference in the lives of individuals with CDKL5 and Rett syndrome. These families are an inspiration!