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Avery’s Ride for PKU cyclist stopping in Sparwood
PKU uncle will cycle more than 7,000 kilometers across Canada this summer to raise awareness and at least $25,000 for a rare, brain-threatening disorder
A young father will ride his bicycle more than 7,000 kilometers coast-to-coast this summer to draw attention to a rare, brain-threatening disorder which affects his newborn niece, Avery. The Canadian PKU and Allied Disorders (CanPKU) non-profit association is proud to announce that Avery’s Ride for PKU will come to a community near you this summer. This project is the brainchild of Kevin Dube, from Kitchener, Ontario, a devoted father of two young children who learned about PKU when his niece was born and diagnosed in August 2013.
He will be in Sparwood on Monday, June 16 at 9 a.m., with CanPKU Vice President Nicole Pallone to speak to students at Frank J. Mitchell Elementary School.
His ride will begin in Victoria on Friday, June 7 and end in St. John’s, NL, on Sunday, August 17. Dube will cycle for 72 days through all weather and terrains, determined to make a difference for Avery and all those living with PKU. He plans to visit every provincial capital and the 20 cities with a PKU clinic. This will be the first ride across Canada for PKU. Mr. Dube hopes to raise at least $25,000 to help the cause of people with PKU.
“My wife and I knew that we needed to do something to support our family,” says Kevin Dube. “After talking with CanPKU President John Adams, we decided that a cross-Canada bike ride would be a great way to advocate, and raise awareness and funds, for those individuals and families dealing with PKU.”
PKU stands for phenylketonuria and effects about 2,000 Canadians. Untreated, PKU can lead to mental retardation and other neurological problems. It is managed primarily by specialized clinics through a challenging diet by severely restricting the intake of all forms of protein containing phenylalanine (PHE) and replacing missing amino acids, vitamins and minerals through specially-made medical formulas and foods low in PHE.
Low blood-PHE levels and adherence to this extremely strict diet can be more easily attained with the aid of Kuvan, the first medication available to treat PKU approved by Health Canada in 2010, which works in about 50 per cent of patients. Due to differences in the provincial health care systems, where you live has a direct impact on your ability to manage this disorder. Only three provinces publicly fund Kuvan, with extremely strict criteria reducing access, and several provinces still fail to fund the necessary medical foods and formulas sufficiently, especially for adults. PKU can be so devastating that every province and territory tests every newborn baby for PKU and has done so since the 1960s.
“Kevin has been astute in his short exposure to PKU in realizing that there is a lot of work to be done in this country to ensure that every patient living with PKU has access to all the treatments and clinical care that they need,” says John Adams, CanPKU President and CEO, and father of a young man with PKU. “There is not a single province or territory in this country that does not need to improve PKU funding in some major way.”
There are several ways that the public can help this initiative. Individuals are invited to ride along for a portion of the ride, or organize a picnic at stops along the route. Donations are being accepted at http://www.corddonate.ca/averysrideforpku, and people can offer food and/or accommodation – bed and breakfast – if they are located near one of the stops.
“We really hope to see people inspired by Kevin’s selfless act,” says Pallone, who is also the mother of young girl with PKU. “Maybe you have some travel points or miles that you can cash in for a gas card, or maybe you are an avid cyclist who can support Kevin by joining him for a portion of the ride. However you want to contribute, it will help make this project successful and in turn help everyone who lives with this devastating disorder.”
For more information about the project and how you can help, please visit www.rideforpku.ca.
About Canadian PKU and Allied Disorders Inc.
Canadian PKU and Allied Disorders Inc. is a non‐profit association of volunteers, dedicated to providing accurate news, information and support to families and professionals dealing with PKU and similar, rare, inherited metabolic disorders. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families. By allied disorders we mean other rare, inherited metabolic disorders also detected by newborn screening. For more information, visit www.canpku.org and download our comprehensive resource for patients and families, PKU and the brain.
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