Page 6 - CLH Foundation - Connected - Winter 2021

JOSEF & CLAIRE +

FOUNDATION

FOR SUCCESS

When other funds or options aren’t available, the Foundation
for Success program can provide CLH-supported children,
youth and adults with financial assistance to enhance their Jillian Ferney, a Resource Consultant with CLH’s Simcoe
quality of life in these areas: County Resource Consultation Services, provides
• Community and Social Inclusion developmental support to Joseph. “Jillian”, says Terri, “has
• Self-Development and Personal Development an amazing ability to think outside the box, to find ways
• Health and Assistive Devices to support Joseph in spite of his not meeting the ‘tick-
• Essential Needs boxes’ that are usually in place for funding or assistance in
There is a formal application process, with requests received education, health and medical care.”
and adjudicated by the Foundation For Success Committee It was Jillian who made the connection that the Foundation
of the CLHF Board. for Success might be able to provide assistance with an
expense that the family had to undertake: converting their
Terri and Mark Gortnar’s children, Claire and Josef, have a vehicle to be able to accommodate two wheelchairs.
rare neurological disease known as Batten disease. Through
their efforts to find the best treatments and medical care for Terri and Mark have raised more than $250,000 for medical
their children, the Gortnars have also positively impacted research projects, acting as ‘angel investors’ to keep it going
other children and families dealing with the same diagnosis. forward. They’ve also been able to help other families by
sending them equipment or help them create memories
Batten disease is a fatal, inherited disorder of the nervous through special experiences. Terry explains, “We understand
system that typically begins in childhood. Early symptoms how hard it is to navigate the rare disease world in Canada
usually appear between the ages of 5 and 10 years, when a and are here to support other families dealing with Batten
healthy child begins to develop vision problems or seizures. disease.”
Over time, affected children suffer cognitive impairment,
worsening seizures, and progressive loss of sight and motor The Gortnars cannot access funds through the CNL2
skills. Claire is experiencing some of the physical impacts and Foundation for the care and expenses of their own children’s
uses a wheelchair for mobility. Joseph is so far asymptomatic, needs, and while there are many foundations related to
but has also been diagnosed with Batten’s. The Gortnars health causes, they often have a very specific focus, “we
hope that early diagnosis and treatment will slow down the aren’t eligible – Batten disease is too rare.”
pace of the disease for both children.
“We are fortunate to have tremendous family support which
Initially the Gortnars created the website CureforClaire. makes it possible for us to do the advocacy and research,”
com to create awareness of Batten disease and raise funds says Terri, “To re-fit our vehicle to accommodate wheelchairs,
for research. More recently, they formed the registered beyond the purchase price there was an additional $17,000
charitable Canadian CLN2 Foundation, to be able to expense for the conversion. So every bit of help that we
accept larger donations and advocate more directly with receive makes a big difference: the support of the CLH
pharmaceutical companies and researchers. Their goal? To Foundation’s Foundation for Success program with a $1000
fund vital research to treat symptoms and one day find a contribution to the expense meant a great deal to us.”
cure: “Never take no for an answer”, says Terri, “I didn’t have a
choice: my children’s lives and well-being depend on it.” Foundation for Success is generously supported by TD Bank,
TD Wealth, and the Ontario Realtors Care Foundation.
This approach has served other Canadian children with
Batten disease as well: through research and advocacy,
the Gortnars were able bring a very expensive but effective
treatment for Batten to Canada, one that had not been
available here before.
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