Lace Up For Kids, a team or individual skating event, Thursday, Nov. 22 from 6 p.m. to 2 a.m. at the Doug Mitchell Thunderbird Sports Centre at the University of British Columbia in Vancouver. The event is a partnership between UBC REC, and the Rare Disease Foundation and B.C. Children's Hospital Foundation in support of rare disease research. Info: rarediseasefoundation.org.
WHEN North Vancouver resident Lori Hall laces up her skates and takes to the ice at the Doug Mitchell Thunderbird Sports Centre in Vancouver Nov. 22, she'll be doing so in support of all the children and families affected by rare diseases in B.C.
A first time participant in Lace Up For Kids, Hall will be among the individuals and teams preparing to skate a collective 25,000 laps of the rink. The event is student-driven, presented by representatives of UBC REC and in addition to skating, participants commit to raising funds in support of rare disease research. The event offers an array of family friendly off-ice activities as well.
Hall knows firsthand the challenges a rare disease can have on a family as her daughter Annika, 2, has an isodicentric chromosome 15 (IDIC15). She's grateful for the support she's received from the Rare Disease Foundation and is a member.
"(They've helped) us find a community of people that, although living with varied and diverse rare diseases, understand this journey like no one else could," she says.
According to the foundation, approximately 3 million Canadians have a rare disease.
"The prevalence of rare disease in our community is alarming. . . .," says Hall. "Rare disease will touch you in your lifetime. We can use statistics to paralyze us or motivate us to action. I choose to be motivated. The Rare Disease Foundation microgrant program has already proven that we can change the established medical paradigm and find real world solutions to problems facing families living with a rare disease. You can make a difference and you can start by supporting Lace Up For Kids."
Isabel Jordan, chairwoman of the Rare Disease Foundation, likewise encourages community members to support Lace Up For Kids.
"Our microgrant research program is doing something no other program is doing," she says. "It is allowing clinician-researchers access to funds that allow them to perform patient-care focused research that they couldn't otherwise do."
In the past three-and-a-half years, the foundation has granted more than $400,000 that researchers have used to develop therapies for four different conditions. Their microgrants have also led to practice changes, including developing a way to screen for 81 treatable causes of intellectual disability, says Jordan.
The foundation has also been making a difference in connecting families living with a rare disease diagnosis. The foundation's Parent 2 Parent Resource Network group meets in Vancouver and Ottawa and soon will be meeting in Toronto, Winnipeg and Squamish.
"We've found that regardless of individual diagnosis, all of us are coping with the same feelings of uncertainty and fear," says Jordan. "We are all navigating the same health care, school and social services systems. We all have so much to give to and learn from one another. At our meetings we have found our home - a group of people who truly understand the journey we are on."
Funds raised from the event will go to the Translational Research Fund at B.C. Children's Hospital Foundation. This fund is used directly by the Rare Disease Foundation for their Microgrant Research program.
The foundation has issued a call for proposals across Canada for patient-care focused rare disease research. Proposals will be vetted and grants will be awarded less than a month after the event.
For more information, visit rarediseasefoundation.org.
© Copyright 2013