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
Natalie Ladly is mom to Reese (11), Cullen (9) and Brynn (6). Brynn was diagnosed with CDD in 2016. She started fundraising shortly after 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 in August 2022.
Founder
Sangeeta Staley is the Founder of CDKL5 Canada. She is mom to two girls; Tia who is eighteen years old and diagnosed with CDD, and fifteen year old Emma.
Sangeeta sits on various committees; ICCRN External Advisory Committee, and with Eplink’s: Community Advisory Committee, and Brain-CODE Data Review Committee. She has also previously sat on the board of Epilepsy Ontario as Vice President, and as a board member with the Ontario Rett Syndrome Association.
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 now as treasurer.
Alison is married with two grown children and loves being Grammie to Finleigh.
President Elect
Teresa Wong is married with two teenage girls. Her oldest Elizabeth was diagnosed with CDD at the age of 12. Teresa is an RN working with Alberta Health Service. She joined CDKL5 Canada once life was a little more settled and the family’s capacity was not on constant overdrive. On top of CDKL5 Canada, Teresa spends her time hanging out with the family and being involved with the special community at large in Alberta.
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 such as the Cancer Society Relay for Life Committee, Alberta Child Care Conference, and the Alberta Leaders Caucus for Early Childhood. She owned an event planning business and excels at networking and building relationships.
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
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 the mom of 3 children: Kaia (8), Avery (6), and Ebba (3). Ebba started having seizures in her first weeks of life, and was diagnosed with CDKL5 Deficiency Disorder at 7 months old. This diagnosis ignited a drive to learn about the condition, to seek information and support within the CDKL5 community, and to start fundraising to help support research towards a cure for the condition. Ebba’s journey has inspired her to take action to help move CDKL5 forwards, and to make life better for CDKL5 patients and their families.
She draws inspiration from Ebba’s strength and resilience, and the vast network of extended family and friends who are supporting her family on this journey. Jordan is a geophysicist and an artist and has 15 years experience working in the energy industry
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!