CANADIAN FOP NETWORK
FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
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CURRENT EVENTS FOP FUNDRAISING BIKE RIDE
 In honour of her sister,
Valerie, and all others who deal
with FOP in their lives,
Vanessa is going to bike ride from Niagara Falls to Toronto
on June 18, 2010 to raise money to fund research for FOP. She will be starting out from
Niagara Falls and riding 210 kilometres to Queen’s Park in Toronto.  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. 
5 1/2 year old James (diagnosed with FOP August 2009) and his family are selling “Because I Care” bracelets throughout the summer at the “Aurora’s Farmers Market” which is open every Saturday till the end of October from 8am – 1pm. 
AIR CANADA JAZZ EMPLOYEES STIR UP THE POT FOR FOP Employees of Air Canada Jazz held their second Chili Day event in March with all proceeds going to FOP. The event was a great success raising $1,500! 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. 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 
 CANADIAN FOP NETWORK BECOMES A REGISTERED CHARITY Following the formation of a non-profit organization in September 2008, the Canadian FOP Network became a registered charity in September 2009. Registered as a non-profit organization under the laws of Canada, the corporation is able to hold activities all across Canada. As a registered charity, the Canadian FOP Network is now able to provide tax receipts to its generous donors. Becoming a non-profit corporation and registered charity brings on many new responsibilities, one of which involves issuing audited financial statements. Audit services are costly to say the least. After a tenacious and extensive search, the Canadian FOP Network was fortunate enough to come in contact with Michael Pinnock, C.A. Michael Pinnock is a Chartered Accountant in Aurora, Ontario who has been so gracious as to provide his services for free. (Yes that's free!). Michael even drives to London for the required formalities. The Canadian FOP Network is very blessed to have found him. As mentioned, there are many responsibilities associated with this new organization. If you have some spare time each month and would like to help, please email canadianfopnetwork@live.com.  CCH HAS FUN WHILE FUNDRAISING FOR FOP
The students at CCH celebrated the end of the 2009 year by holding a Carvinal Day event. Everyone had a great time while raising funds for FOP. Proceeds from this event were donated at a year end assembly by the Students' Council President, J.P. Circelli. The crowd roared when Randy Kelly was presented with an oversized cheque for $1,500! Brooke Connell'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.... REGISTERED DISABILITY The Government of Canada has demonstrated a strong commitment to people with disabilities and their families. The 2007 Budget announced the Registered Disability Savings Plan (RDSP), the Canada Disability Savings Grant and the Canada Disability Savings Bond as a way 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. 
CCH'S GREEN TEAM DOES IT AGAIN! Catholic Central High School held their second bracelet sale campaign this spring and raised $2,500! Students, the Facility and the Students' Council gave generously. Although in the midst of a recession, this year's campaign exceeded last year's results. Wowsa!. Cory Rochon-Ratko and the Green Team again showed their spirit by creating a buzz about FOP. A special thanks goes out to Randy Kelly and Cory Rochon-Ratko for their hard work organizing the campaign and to Donna Hammond (The Principal) for allowing it to happen. The Spirit is Alive! |
