Welcome
to Ontario Parents Advocating for Children with Cancer’s
website. In
this website you will be able to find information on resources
for families and parents of children with cancer.
Message from our OPACC President/Chair Dave Munro
A lot of time has passed since we sent out our latest email blast
and we apologize for not keeping better attention to some of the
finer details of keeping all our parents and members informed. OPACC
is 100% volunteer run and each Director lives the reality that
OPACC is a big part of.
We worked hard in partnership with the Childhood Cancer Foundation
to put in a proposal to the Ontario Trillium Foundation for a grant
to help where it is needed most, on the front lines with a Parent
Liaison, to advocate for families of children with cancer. We
weren’t successful in that attempt the first round through
but we learned some very valuable lessons. OTF funds are
not the easiest to get and this was our first time so we are preparing
for another try and will be writing a new OTF application soon.
At our recent board meeting we talked about getting some infrastructure
funding to help build the organization. We are receiving
funding for the Parent Liaison program from Lainie’s Angels http://www.lainiesangels.com and
we need to focus on the capacity building piece using OTF funding
when it is granted. Other avenues of funding are also being looked
at, including corporate and private donations.
We have been trying to work with Sick Kids to bring back a parent
support group. For a number of families who have had a long
childhood cancer journey, they can remember a time when there was
a Parent Advocate in place. This individual was a dedicated
Mom whose child had been diagnosed with a very rare cancer and
had walked in those very unpopular shoes. She was only one
Mom but she worked as though there were a whole team of folks. She
would most often work at Sick Kids at least thirty hours a week
or more ... all of them simply because she cared ... and every
hour was unpaid; she volunteered her time freely. The position
was so important to the Hematology/Oncology Program it was mentioned
in their accreditation process and the program was used as a model
at BC Children’s Hospital.
Although this Parent Advocate role should have been made a paid
position, due to budgetary reasons the funding was not made available
by Sick Kids. Overwork and lack of recognition resulted in
this key volunteer resigning her volunteer position. OPACC
believes in the need for this position and has been working hard
on reestablishing a paid Parent Liaison role at Sick Kids. OPACC
has the funding available to support this investment in our families.
Most recently we have worked with the Sick Kids team to develop
a parent survey that is now being distributed at the Hem/Onc clinic. We
hope the results will reinforce what we know to be true…the
need for this type of support is great.
Some exciting events have happened in the Ontario Hem/Onc world.
A new POGO Clinic opened in February at Southlake Regional Health
Centre in Newmarket and is already seeing a number of families. It
has been personally gratifying for me as I am an employee of Southlake
and was involved in helping the parties come together. OPACC
looks forward to working with Southlake to ensure the families
served by the clinic will have access to some parent networks.
OPACC recently met with the Coast to Coast Foundation. This
foundation is focused simply on raising funds to support agencies
that directly provide services to those affected by childhood cancer. One
of their largest recipients are the kid’s cancer camps. In
our discussions with them they see OPACC as an agency that they
would like to partnership with and support financially. The best
thing about this organization is that 100% of the money they raise
at their events goes to the charities directly. We will work
in partnership with Coast to Coast and Lainie’s Angels to
provide these value added services OPACC can provide.
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