- Rare disease group encouraged by bipartisan interest in bringing care in B.C. from "worst to first" -
SPARWOOD, BC, May 13, 2013 /CNW/ - Canadian PKU and Allied Disorders (CanPKU) is pleased to announce the successful conclusion of its B.C. election candidate outreach and education campaign. Since the writ was dropped on April 16, families from across B.C. affected by the rare, brain-threatening inborn metabolic disorder, Phenylketonuria (PKU), engaged candidates in their ridings, and urged them to commit to bringing PKU care in the province up to national, and international, standards and best practices.
"We have received an expression of interest from all political parties and across several constituencies, in working with our organization to ensure patients' brains are protected from this destructive disorder," said CanPKU Vice President, Nicole Pallone of Sparwood, B.C., whose five-year-old daughter Rosie has PKU. "We're grateful to all candidates who took time out of their busy campaign schedules to learn about the needs of PKU patients, and how they can help bring B.C. from worst to first in Canada."
Call for Investment in Comprehensive Brain Protection Strategy
Since 2009, CanPKU has been advocating to the B.C. government to raise the standard of care for the province's 170 patients who struggle daily to prevent the devastating health impacts of PKU. In 2013, CanPKU introduced its Comprehensive Brain Protection Strategy for People with PKU, which calls for a modest investment by the B.C. government in funding for the only approved drug therapy, called Kuvan, and special medical foods - together proven to deliver better health outcomes for PKU patients.
"Many of the candidates we spoke with, including former cabinet ministers and party leaders, were shocked to hear that in the past four years we've had a staggering 20 plus meetings and phone calls with government and are still no further ahead," added Pallone. "We are hopeful that once elected, candidates will keep their word and put an end to the systematic discrimination the PKU community has endured for far too long."
Over the next 60 days, CanPKU will reach out to elected officials who agreed to collaborate with the patient community, to continue the conversation and positive momentum established prior to the election. In the meantime, patients and families in B.C. will continue their work in disease awareness and education throughout May - PKU Awareness Month across Canada.
PKU (phenylketonuria) is a rare inherited, brain-threatening metabolic disorder, observed when the body is unable to process phenylalanine ("Phe"), an essential amino acid found in dietary protein. The resulting accumulation of Phe in the blood is toxic to the brain, and if left untreated, symptoms can range from mild cognitive impairment to severe mental retardation. Approximately 1 in 12,000 to 15,000 infants in Canada is born with PKU. All provinces and territories, including B.C., offer newborn screening tests to determine if a child is born with PKU. If PKU is detected, the appropriate treatment must be initiated immediately and maintained throughout life to ensure normal brain development.
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.
SOURCE: Canadian PKU and Allied Disorders Inc.
For further information:
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