- 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
"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
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
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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SOURCE: Canadian PKU and Allied Disorders Inc.
For further information:
Cohn & Wolfe
416-924-5700 ext. 4070