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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 Tanya Chute, VP at tanya.chute@canpku.org

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.

  • Emma Weichert – Mom of Eachran born in 2019. She is a nurse that works with adults, so PKU was new to her too! She loves cooking and the outdoors. Please reach out for her email.
  • Tanya Trebley is a mother of two young boys, born in 2012 and 2014, both with PKU, and lives in Kingston, Ontario. Please reach out for her email or phone number.
 

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 or phone/text. Please reach out for her contact information.
  • 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, she has continued to grow with her roles at CanPKU+ and is currently our VP. Tanya lives in Peterborough, Ontario and can be contacted by email at or phone. Please reach out for her details.

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 by email or phone. Please reach out for her contact details.
 

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 by email or phone. Contact us for her details. 

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. He has used Kuvan in the past, but is currently on food therapy alone. Charles lives in Toronto, Ontario.  In 2014, Charles became a CanPKU+ Director and our Membership Chair. He can be reached by phone or email. Contact us for his details.
  • Brian Quinn is an adult PKU male who was off diet for his late teen/twenty years. He didn't realize at first the fog and cognitive struggles were from being off diet. After some time, he returned to diet and was able to function better in post secondary and in other aspects of his life. He has advocated for other Atlantic provinces and is part of the Board of Directors. He can be reached by email. Contact us for his details.
 

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 daughters into the world in March 2016 and August 2019.  She is located in western Canada. Please contact her by email. Reach out for her email address.
  • Tania Leblanc is an adult with PKU. Her daughter was born in 2012. She is on diet. in her own words “Some days I find it hard but every day is a new day and I keep trying! My pregnancy went very well.” She is located in Eastern Canada. She can be reached by email or phone.
  • Maria Depenweiller - is an adult with PKU. She has 3 beautiful children as a result of being on diet during her pregnancies. She is tri-lingual including English and French. She has created and published PKU reShe lives in Ontario. She can be reached by email. Reach out for her contact details.


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Email: info@canpku.org


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