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2014 Annual Report

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Page 1: 2014 Annual Report - Jesse's JourneyJesse’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,

2014 Annual Report

Page 2: 2014 Annual Report - Jesse's JourneyJesse’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,

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

Page 3: 2014 Annual Report - Jesse's JourneyJesse’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,

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!

Page 4: 2014 Annual Report - Jesse's JourneyJesse’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

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

Page 5: 2014 Annual Report - Jesse's JourneyJesse’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,

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!

Page 6: 2014 Annual Report - Jesse's JourneyJesse’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,

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

Page 7: 2014 Annual Report - Jesse's JourneyJesse’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,

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

Page 8: 2014 Annual Report - Jesse's JourneyJesse’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,

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

Page 9: 2014 Annual Report - Jesse's JourneyJesse’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,

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