Arielle Kayabaga, London West
Linked statement
“May was Prader-Willi Syndrome Awareness Month. Families affected by this rare genetic disorder came to Parliament Hill to ask for better support, quicker access to therapies, and fairer policies. My nephew has this condition, and these families deserve the support they need to live full lives.”
“Mr. Speaker, May was Prader-Willi Syndrome Awareness Month, a time to recognize individuals and families across Canada living with the rare genetic disorder that requires lifelong medical, behavioural and social support. Last Wednesday, families from across the country gathered on Parliament Hill for FPWR Canada’s first day on the Hill, raising awareness and advocating for stronger support, timely access to therapies and more inclusive policies for Canadians living with rare diseases. This cause is especially meaningful to me, because one of those remarkable children is Olivier, my very own nephew. Like so many families, ours has witnessed both the incredible resilience of individuals living with Prader-Willi syndrome and the daily challenges they face. These families are not asking for sympathy; they are asking for equity, dignity and the opportunity for loved ones to live full lives. I want to thank FPWR Canada and the families, caregivers, researchers and advocates who continue to push for progress and bring hope for rare disease communities across Canada.”
Mr. Speaker, May was Prader-Willi Syndrome Awareness Month, a time to recognize individuals and families across Canada living with the rare genetic disorder that requires lifelong medical, behavioural and social support. Last Wednesday, families from across the country gathered on Parliament Hill for FPWR Canada’s first day on the Hill, raising awareness and advocating for stronger support, timely access to therapies and more inclusive policies for Canadians living with rare diseases. This cause is especially meaningful to me, because one of those remarkable children is Olivier, my very own nephew. Like so many families, ours has witnessed both the incredible resilience of individuals living with Prader-Willi syndrome and the daily challenges they face. These families are not asking for sympathy; they are asking for equity, dignity and the opportunity for loved ones to live full lives. I want to thank FPWR Canada and the families, caregivers, researchers and advocates who continue to push for progress and bring hope for rare disease communities across Canada.