CANADIAN FOP NETWORK
FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
Children and individuals with FOP are not forgotten because YOU care. "Because I Care" bracelets are worn by friends and family as a symbol of compassion and strength. Thank you for helping champion our cause.
If you are interested in buying an awareness bracelet, please send a $5 donation for adult and/or a $3 donation for child/youth bracelets with a note indicating the size(s) and number of bracelets. Cheques should be made out to CFOPN and can be mailed to CFOPN, 101 Brixham Cr., London, ON N6K 1K9.
If you are interested in purchasing a number of bracelets for an event, please contact us by e-mail at canadianfopnetwork@live.com to discuss financial arrangements.
Congratulations to everyone who joined in this year's campaign held weekend of August 20, 2011.
$40,000 was raised to help find a cure!
A big thanks to all for their generous donations and support in increasing awareness.
CCH 4th ANNUAL
CAMPAIGN FOR FOP
CCH showed their spirit again this year raising over $2,500 during their 4th annual capaign for FOP.
As in the past, everyone kicked in to raise awareness and proceeds to cure FOP. A special thanks goes out to Marylyn Palarchio for all of her help.
Brooke's Uncle Randy works at CCH and ever since they heard about this devastating disease, everyone (both students and facility) having been showing what CCH is all about....
1st CANADIAN NATIONAL FOP CONFERENCE
The 1st Canadian National FOP Conference and Medical Clinic was held May 29 to May 31, 2009 in London, Ontario.
Patients, families and friends all had the opportunity to share their stories while hearing of the great strides being made by researchers and options available for medical care. ......more
SICKKIDS FOUNDATION SUPPORTS CFOPN
SickKids Foundation supports families with Fibrodysplasia Ossificans Progressiva. The CFOPN gratefully acknowledges the support of SickKids Foundation for their generous funding of the Canadian National FOP Conference and Family Medical Clinic, May 29-31, 2009.
SickKids Foundation is the largest non-governmental granting agency in child health in Canada. Through its National Grants Program, SickKids Foundation invests $4 million annually across Canada in paediatric research, focusing on issues important to children's health which have not been addressed elsewhere.
CANADIAN FOP NETWORK
JOINS C.O.R.D.
The Canadian FOP Network has become a member of the Canadian Organization for Rare Disorders (C.O.R.D.) to join in the commitment to enhance the lives of those affected by rare disorders.
C.O.R.D. provides a strong common voice to advocate for health policy and a healthcare system that works for those for rare disorders. C.O.R.D. works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
BC FAMILY JOINS
IN THE STRIDE
TO CURE FOP
The Friz-Munro family participated in the IFOPA's "Stride to Cure FOP" event.
People in various parts of the USA and Canada gathered donation pledges, and then went on a walk. Each "Strider" wore a great "Stride to Cure" T-shirt, and also a name tag with the given name of one of the 400 or so people with FOP who are members of the IFOPA.
The Friz-Munro family walked around the beautiful Deer Lake Park in Burnaby, BC. All the participants together raised about $20,000 for the IFOPA, which supports and funds FOP research at the University of Pennsylvania.
FOR A CHILD WITH FOP,
IT'S ONLY A MATTER OF TIME
AIR CANADA JAZZ EMPLOYEES
STIR UP THE POT FOR FOP
Employees of Air Canada Jazz held their 3rd annual Chili Day event with all proceeds going to FOP.
The event was a great success raising $1,100!
Chili, buns, deserts, bracelets and 50:50 tickets were sold. A good time was had by all.
A special thanks goes out to Cameron Connell and his co-workers for arranging this event, as well as Jazz Air for their generosity in providing the venue.
MIRANDA SHARES HER STORY
Miranda shares her story on CTV while proving that FOP can't stop the Friz family from hope and enjoying the little things in life like a trip to Disney World or a board game with loved ones.
MIRANDA'S ARTICLE IN KIDS TODAY IN MOTION
Miranda shares her story in the Winter 2010 issue of Kids Today In Motion.
A GRANNY'S LOVE
Brooke's Granny has knitted numerous beautiful scarves to help raise FOP research monies. They are simply snuggly and come in beautiful colours. As well, each scarf has a CFOPN logo to help raise awareness. If your interested in obtaining a batch, just e-mail canadianfopnetwork@live.com.
BRACELETS AT THE MARKET
5 1/2 year old James (diagnosed with FOP August 2009) and his family raised funds for FOP by selling “Because I Care” bracelets throughout the summer at the “Aurora’s Farmers Market”.
REGISTERED DISABILITY
SAVINGS PLANS
The Government of Canada has demonstrated a strong commitment to people with disabilities and their families. The Registered Disability Savings Plan (RDSP), the Canada Disability Savings Grant and the Canada Disability Savings Bond are ways to help eligible people with severe and prolonged disabilities, their families and others to save for long-term financial security.
Contributions paid out of the RDSP are not included in income at the time of payment since they are not deductible at the time of contribution.
Depending on income and contribution levels, Canada Disability Savings Grant and Canada Disability Savings Bond may also be available.