Welcome to Canadian PKU & Allied Disorders
We help your children
Healthy children
1 in 12,000 newborns
Adults with PKU
We Are Not PKU

Need to talk?

Need to talk?  We’re here to help.  Through our network of volunteers, we are sure that we can connect you with someone that understands exactly what you are going through.  Please feel free to contact any of the volunteers below at any time – they will be happy to help you however they can.  If none of the people below seem to fit with your needs, or you would like to offer yourself as a contact for a different category, please contact Nicole Pallone, VP at nicole.pallone@canpku.org or 250-910-6426.

 

NEWLY DIAGNOSED?

It is a tough time, but talking to someone who understands what you are going through always helps!  Please feel free to contact either of these parents for support.

 

  • Tanya Compeau is a mother of two young boys, born in 2012 and 2014, both with PKU, and lives in Kingston, Ontario. Please contact her by email at tanya.trebley@gmail.com or by phone/text at 613-453-6559.

 

 

KIDS IN SCHOOL?

Dealing with PKU once your child hits the school system can be tough but we’re hear to help.  Feel free to contact one of these parents who have children in Elementary School!

 

  • Nicole Pallone is the mother of Rosie (born 2008, PKU) and Carmella (born 2010).  In 2010, she became the Vice President of CanPKU and when Rosie entered kindergarten in 2013, she developed “The ABC’s of PKU” to help educate the school staff and keep Rosie safe. Nicole lives in the BC Rockies and can be reached by email (Nicole.pallone@canpku.org) or phone/text (250-910-6426).
  • Tanya Chute is a mother of one young PKU son, born premature at 32 weeks in 2010. In 2013 she became a CanPKU Director and our Secretary.  Tanya lives in Peterborough, Ontario and can be contacted by email at tanya.chute@canpku.org or by phone or text at 705-768-3244.

 

TEEN WITH PKU?

 

  • Gwynneth Harland – Gwynneth is a teenage girl living in Calgary, Alberta who successfully maintains good blood-phe levels as well as her school grades and a social life! If you are a teen looking to talk to someone who truly understands, please contact Gwynneth at gah1524@gmail.com or 403-276-2953.

 

 

PARENT OF PKU TEEN?

The teenage years can be a challenging time in parenting for anyone, not just those with PKU!  However, the necessary diet compliance increases the complexity – talk to other parents who have been there for ideas and support.

 

  • Sandra Hughes is the mother of a teenage girl with PKU, and is familiar with some of the struggles that can come with the teen years. Her daughter is socially and academically successful but this has not been without challenges.  Sandra has been a dedicated CanPKU volunteer for many years and can be reached at

 

 

ADULT WITH PKU?

Maybe you have always been on diet with great levels.  Maybe you want to return to diet but don’t know where to start.  Or maybe you just want to talk to someone else that knows what it is like to live with PKU!

 

  • Charles Black is an adult PKU male who was off diet for many years but has successfully returned to medical treatment, including diet and Kuvan. Charles lives in Toronto, Ontario.  In 2014, Charles became a CanPKU Director and our Fundraising Chair.  Please contact him by email at chascblack@gmail.com or by phone or text at 416-525-4467.

 

 

MATERNAL PKU?

Having PKU and being pregnant can be a scary thought, but there are many people who have dealt with maternal PKU very successfully! Talking to someone who has had the same fears but overcome them can be very helpful!

 

  • Amanda Cosburn is an adult PKU female who lives in Kamloops, BC. Amanda spent years struggling with the diet but now maintains acceptable levels with low protein foods and formulas.  Amanda has been a regular volunteer at CanPKU since 2009, in 2014 became a CanPKU Director and most excitingly, she welcomed her daughter into the world in March 2015.  Please contact her by email at amandacosburn@gmail.com or by phone or text at 250-686-4005

 

 

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