2014 annual report - jesse's journeyjesse’s garden on november 6, 2014 jesse's journey...
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2014 Annual Report
2014 was an extraordinary year for Jesse's Journey on a number of fronts.
We have often agreed that half of our mandate is to provide hope and comfort to the families affected by DMD. Some
comfort was hopefully provided with the dedication of the peaceful and beautiful Jesse's Garden, a quiet place for
memories and remembrances.
Families who were previously unaware of Jesse’s Journey and who heard of Grandpa Bob Facca's incredible 4,000
kilometre walk will be forever grateful, not only because of the $750,000 research dollars raised, but the hope it
brought to them when they learned of the wonderful progress being made toward a treatment and a cure. To watch
the tireless Bob Facca's determination was very special.
Our dedicated researchers are making wonderful progress, and in 2014, the other half of our mandate - $758,000
towards DMD research - helped to make that happen, thanks to our volunteers, donors and sponsors who, directed by
our incredible office staff, never disappoint.
The hard work by our staff and volunteers on our major fundraisers is why they are successful.
It was also time, as of January 2015, for me to move to a different chair around the Board table. It has been an honour
to serve as President.
Peter Garland President (2003-2014)
2014 marked the 20th anniversary of the founding of Jesse’s Journey. Looking back over the last 20 years, I consider
myself fortunate to have had the opportunity to lead the parade on a couple of occasions.
2014 was a time to look back and give thanks for all those board members, committee members and volunteers from
all walks of life who have given freely of their time and talent and energy in supporting our cause.
One of the most remarkable things to happen in 2014 was to see the tremendous effort put forward by a grandfather
for his grandson. Bob Facca’s 4,000 kilometre walk has helped move research closer to a cure.
The opening of ‘Jesse’s Garden’ in the fall of 2014 was both a very moving experience and a proud moment for all of
the Duchenne families whose sons will always be remembered.
I know Jesse would be very proud of every person who has stepped forward over the past 20 years to help others.
2014 saw Jesse’s Journey solidify its position as Canada’s leader in funding research targeted at finding a cure for
Duchenne.
As we look to the future, I want to reflect for a moment and express heartfelt thanks to everyone who has helped
move us closer to the cure that we know is going to be found.
Founder and Volunteer
Grandpa Bob raised more than $750,000 during “Grandpa Bob’s 4,000km Walk for Louie” – in addition to the
$250,000 raised during his 2012 Ontario walk – for a total of more than $1 million raised for research.
Grandpa Bob was walking for his 7-year-old grandson Louie – and for everyone who faces Duchenne muscular
dystrophy.
His 2014 walked started in Quebec on May 12 and he crossed the finish line in Winnipeg on November 19. Bob was
joined by many supporters along the way including Tom Cappelli, whose 17-old son Aidan has Duchenne. Tom
walked more than 600km with Grandpa Bob.
65-year-old Bob says the entire journey was an incredible experience because of the people. He says “We’ve had
people who give us money – a $20 bill and you knew they couldn’t afford $2. People are offering us their houses, to
come for showers, for dinners. I’m very humbled. We live in the best country going.”
We thank Grandpa Bob and the many volunteers, donors and supporters who made Grandpa Bob’s 4,000km Walk
for Louie a great success!
Jesse’s Garden
On November 6, 2014 Jesse's Journey was proud to officially dedicate Jesse's Garden.
Located in Jesse Davidson Park in London Ontario, Jesse's Garden is a celebration of the life of Jesse Davidson who
passed away in 2009, as well as many of the other children and young adults we have lost who bravely faced Duchenne
muscular dystrophy.
This loving tribute to Jesse will also serve as a place to honour and thank the many donors and volunteers who have so
generously supported Jesse's Journey over the past 20 years.
The garden was planted in partnership with students from Saunders Secondary School - Jesse's high school. The stu-
dents designed and planted the garden, ensuring that only plants native to this area would grow in Jesse's Garden.
Celebrating our Volunteers From the very beginning, Jesse’s Journey has relied on volunteers for
everything from fundraising to committee membership to office work
and so much more.
In 2014, we recognized those volunteers who have been part of Jesse’s
Journey for 15 years or more.
Thank you!
Pictured (L-R): Harry Norris, Terry McDonald, Bob Picken, Peter Garland,
John Davidson, Joan Picken, Darlene Sanderson, Ken Chaplin, Gary
Dallner, Wilf Myers, Megan Clements, Bob Lucas.
Not pictured: Pete Bowley, Ron Calhoun, Ted Eadinger, Mac Haig, Brian
Hollis, Al Matheson, Anne Matheson, Terry Olver, Cam Paton, George
Payne, Kevin Robertson, Dave Rowe, Carol Ann Scott, Dave Schulthies
Defeat Duchenne month kicked off on May 4 with the
annual Walk to Defeat Duchenne in Springbank Park.
Throughout the month of May, events were held across
our region and raised $110,000!
The 17th annual Jesse’s Journey Charity Golf Classic
took place on September 11, 2014 at beautiful Forest
City National Golf Course. Close to $25,000 was raised,
bringing the total amount raised throughout the
tournament’s history to $750,000!
The 3rd annual Xtreme Warrior Challenge was a great
success. More than 400 Warriors helped raise more
than $30,000 for Jesse’s Journey. Many thanks to
31 CER, St. Thomas for their tremendous help in putting
this memorable event together!
We are so grateful to our Duchenne families and community partners throughout the region who hold events
in support of Jesse’s Journey. Because of their dedication and generosity, Jesse’s Journey is able to continue to
fund the most promising research to find a cure for Duchenne muscular dystrophy.
Thank you to those who held events in 2014 and collectively raised more than $267,000!
Fleetwood Country Cruize In (pictured above) - Steve Plunkett—London, Ontario
Eric’s Amazing Race (pictured above) - Morden family—Burlington, Ontario
Brian Connor’s Rice Lake Challenge (pictured above) - Brian Connor, George Bennett, Sharon Lynn-Weese—
Cobourg, Ontario
Jeff Preston Celebrity Golf Classic (pictured above) - Jeff Preston, Kevin Carter—Port Elgin, Ontario
Cherryhill Cruise Night—Ken Chaplin—London, Ontario
Weyburn Campaign to End Duchenne—Kerr Family—Weyburn, Saskatchewan
Walk the Block for Brock—Janes family—Newfoundland and Oshawa, Ontario
Tory’s Tourney for Jesse’s Journey—Provenzano family—Windsor, Ontario
Every year, Jesse's Journey invites researchers worldwide to submit Duchenne-related research applications for
funding. The most promising projects are reviewed by the Research Funding Advisory Committee (RFAC—comprised
of clinicians, scientists and DMD parents) and peer-reviewed by
experts in the field of neuromuscular disease.
The highest ranked projects are funded.
We have made great strides supporting life-changing
research. As of the end of 2014, Jesse's Journey has granted
more than $6 million to research, resulting in:
Major advancements in clinical discoveries
Helping children with DMD live longer lives
Significant improvements in the quality of life for those
living with DMD
In 2014, Jesse’s Journey granted $758,000 to projects that had been reviewed and approved by the RFAC
and the Jesse’s Journey Board of Directors:
Dr. Jerry Mendell (The Research Institute at Nationwide Children’s Hospital, Columbus, OH)
“Restoring dystrophin to the heart in mdx and porcine model of Duchenne/Becker muscular dystrophy”
Dr. Dongshen Duan (The Curators of the University of Missouri, Columbia, MO)
“Evaluation of the human version second-generation AAV micro-dystrophin vector in adult dystrophic dogs”
Dr. Toshifumi Yokota/Haifang Yin (University of Alberta, AB)
“Development of novel peptide conjugates for morpholino-mediated multiple exon skipping in the heart”
Dr. Jerry Mendell (The Research Institute at Nationwide Children’s Hospital, Columbus, OH)
“Dual-vector mediated reconstitution of minidystrophin transgene and restoration of dystrophin function in mdx
model of DMD”
Dr. Bernard Jasmin (University of Ottawa, Ottawa, ON)
“Combinatorial Drug Therapy (CDT) Targeting Utrophin Up-Regulation for DMD”
Dr. Sherri Katz (Children’s Hospital of Eastern Ontario, Ottawa, ON)
“Stacking Exercises Attenuate the Decline in Forced Vital Capacity and Sick Time (STEADFAST)”
Jesse’s Journey proudly supports the Canadian Neuromuscular Disease Registry (CNDR), a Canada-wide registry of
people diagnosed with a neuromuscular disease. Important medical information is collected from patients across the
country to improve the understanding of neuromuscular disease and advance the development of new therapies.
For more information on the research projects currently being funded by Jesse’s Journey, please visit our website at
www.jessesjourney.com
Revenue $2,152,202
Research grants and contributions to Jesse
Davidson Endowment and Research Fund
$1,464,691
Fundraising Expenses $347,926
Administration Expenses $339,585
Full audited financial statements are available at www.jessesjourney.com or by calling 519-645-8855
2014 Board of Directors
Peter Garland—President
Kevin Robertson—Treasurer
Megan Zinn—Secretary (non-voting)
Scott Alexander
Megan Clements
Frank Desrosiers
Steve Duench
Dr. Lisa Hoffman
Michael Lerner
Brenda Lausanne
Allan Matheson
Dr. Reza Mazaheri
Colin Yausie
Staff
Rick Moss—Managing Director
Sue McKittrick—Special Events Administrator
Michele Sands—Planned and Major Gifts Officer
Megan Zinn—Administrative Director
Founder
John Davidson