Notice to media - MPS II(Hunter Syndrome)



    MONTREAL, Feb. 28 /CNW Telbec/

    Newsmakers' breakfast: International Rare Disease Day
    Date: February 28, 2008
    Place: Ottawa Sheraton Hotel, O'Connor Room

    News opportunity

    A Windsor, Ontario family whose son is affected by MPS II (Hunter
Syndrome) is threatening to move to the US so that their child can receive a
life-saving enzyme replacement drug therapy which has been approved by Health
Canada, but is not funded in Ontario. Justyna Cajmer, the mother of
11-year-old Szymon, is desperate to secure funding for her son.
    MPS II is a rare, devastating genetic condition caused by an enzyme
deficiency. Because affected individuals lack an enzyme responsible for
breaking down mucopolysaccharides, these proteins build up throughout the body
and cause progressive damage to all organ systems, leading to a vastly
shortened lifespan.
    Elaprase enzyme replacement therapy is the first and only therapy
approved for the treatment of MPS II, and halts the progression of the
disease. It is funded in BC and Alberta, and in many other countries
throughout the world.
    According to Ms. Kirsten Harkins, Executive Director of The Canadian MPS
Society, "This is a progressive disease, so early intervention is critical. We
are fortunate that children in Alberta and BC with MPS II are receiving enzyme
replacement therapy. It is urgent that children in Ontario have access as well
to this life-saving treatment."




For further information:

For further information: regarding MPS II and interview opportunities
with the Justyna Cajmer, please contact: Kirsten Harkins, (604) 924-5130,
(604) 340-4427 (cell)

Organization Profile

MPS II (HUNTER SYNDROME)

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