But she did go, urged on by the memory of Megan’s last days, during which time Megan asked her parents and friends to keep her work raising awareness for childhood cancer research going.

I am forever in awe of the childhood cancer families who work so hard to raise money and awareness to fight the diseases that their children battle(ed). It is agonizing and exhausting for them at times I am sure. And yet they must, because, for some, the only thing worse than sharing their story is not sharing their story.

For those in the battle, research is the only hope. A solution could come soon, perhaps in time for their child. It was only a generation ago that childhood leukemia claimed something like 80 per cent of sufferers. Now the numbers are reversed and climbing, with more than 80 per cent of those battling childhood leukemia surviving. I’ve heard the number quoted higher than 90 per cent in some circles.

These families would almost all rather be doing something else. Most are unpaid, and all are so very tired from the additional burdens that fighting childhood cancer has put on them. They are absolute heroes in my eyes.

None of this takes away from the vital work being done by professional fundraisers, marketers and public relations folks at any medical, research institution or drug company doing what they can to fight childhood cancer or any other disease for that matter. Goodness knows, I am one of them from time to time, and I have been inspired and humbled by extraordinary professionals doing everything they can to advance the cause.

But in my books, the families are heroes of the highest order. There is no profit to be made by drug companies to research certain diseases, all too often, childhood cancers. That’s not a dig. They are businesses and their responsibility in the world as it is now is to make money for their shareholders, and not to solve the world’s ills. It costs billions of dollars to create new drugs, and the money they’ll get back from creating drugs to treat certain childhood drugs won’t cover the investment. So setting up and funding research facilities has actually fallen, in some cases, to families.

Families put their exhaustion, their personal pain, their incredible fear of what might come or grief at what has already transpired aside to work for a day when no one else might endure what they have faced or face now.

And if that isn’t the mark of a hero, I don’t know what is.

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This year, Three Days Grace, Tom Hanks, Nickelback, Dolly Parton and the Kratt Brothers all donated items (in some cases much more) that helped The James Fund raise money to help kids fight neuroblastoma, one of the deadliest childhood cancers.

Every year, the California Wine Fair sweeps across Canada. This year, in Toronto alone, it brought 400 premium wines from 125 of California’s top producers, the largest tasting tour of California wines in the great white north. As it was last year, The James Fund was selected by The California Wine Fair as the charity to run and benefit from the silent auction. And what a silent auction it was.

Spirited bidding broke out on several items, including this beautiful guitar autographed by every member of Three Days Grace. Even better, the band came to the event and had their picture taken with the winner. Band member Brad Walst and his wife Rhonda, who is on the board of The James Fund, secured a number of other wonderful items for the cause, including a Tiffany Silver Limited edition Kings of Leon flask, a guitar signed by every member of Nickelback and other exclusive one of a kind items.

And as they do at all of these events, everyone wanted to talk to Syd Birrell, the father of James Birrell, for whom The James Fund is named. Although it is too late for his own child, Syd works tirelessly for a day that other children will not die from neuroblastoma. Syd and Brad spent a fair bit of time talking about the cause and some of the important break-throughs coming as a result of the research The James Fund supports.

Tens of thousands of dollars were raised – but more importantly, neuroblastoma families had the chance to connect with new people and tell them about the important research being done at The James Birrell Lab at SickKids to help fight this most deadly of childhood cancers.

Thank you to our host, Rick Slomka.

Let’s do it again next year, shall we?

Photo credit: all photos by Susan McLennan

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The United States Consul General cordially invites you to uncork California’s sunshine in a bottle at the 2010 California Wine Fair. And as if FABULOUS wine weren’t enough,  iconic rockers Nickelback and Three Days Grace have thrown in a little song, by way of signed guitars they are donating for the Silent Auction. Tom Hanks, Dolly Parton and The Kratt Brothers have also donated autographed items.

Date: Monday, April 19^th, 2010     Time: 7:00 p.m. to 9:30 p.m.

Place: The Fairmont Royal York                                                Admission:
The Canadian Room                                                                           • General Ticket Price $ 65.00
100 Front Street West                                                                       • Wine Club Members $ 60.00

Toronto, ON

The James Fund for Neuroblastoma Research will be operating a silent auction at the event. Also, $40 from every ticket purchased through The James Fund will go to the neuroblastoma cause.

Enjoy a unique opportunity to sample a wide selection of more than 400 premium wines from 125 of California’s top producers at this event, the largest tasting tour of California wines in Canada! And know that you’re helping fight one of the most deadly forms of childhood cancer that there is.

To purchase tickets, please complete and submit to one of the following:

1. By fax to (705) 749-6907
2. By email: Scanned forms can be sent to diana.birrell@jamesfund.ca
3. By mail: The James Fund, 625 Whitaker Street #4, Peterborough, On  K9H 7L5

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I was at a very special party last night: the 25th wedding anniversary party of Syd and Pam Birrell. Syd and Pam are the devoted parents to Rebecca, Ben and James, who died in 2001 at the age of 7 of neuroblastoma, a deadly childhood cancer.

James and his family began raising money to fund research to save James’ life and the lives of other children just like him. When it was too late for James, the family continued on, hopeful they would find a cure in time for other children.

The Birrells have given so much, including millions of dollars they have raised through the fund they established in James’ name. And they do so much more…

As painful as it must be, they stand with other neuroblastoma families as their stories are unfolding. As neuroblastoma children get sicker, the Birrells walk beside the parents on the slow, painful journey of losing a child. They know for that parent, the path is inherently lonely. But they make sure they do not walk it alone.   

What the Birrells do is selfless. They are not motivated by money or personal advancement. They are motivated by the belief that some day soon, children will not die of the disease that took their son. They are actively working for a day when The James Fund can cease to exist – when a cure has been found for neuroblastoma. 

But about the party.

it was a glorious fun-filled affair with a great many people in attendance. Dear friends traveled in from far and wide, including from New York.

Additionally, the lovely and extraordinarily talented Leslie Fagan, who made her Carnegie Hall debut last season, performed classic works personalized for the occasion. 

Rhonda and Don Barnet hosted the fabulous fete in their beautiful home, Rhonda’s parents supplying fresh lamb and beef cooked slowly over a spit for the occasion.

Wine was plentiful, and laughter filled the air.

Syd and Pam, we know you would not have chosen the path life put you on if the choice had been yours to make. But you have looked despair in the eyes and chosen hope. You choose to go on and to find joy not just in memories but in today and the promise of tomorrow.

You remind us of how strong the human spirit can be; you inspire us all with your spirit of giving.

We’re glad you are our friends. And we can’t wait to celebrate with you again 25 years from now. Then, we hope, your guests of honour will include children cured of neuroblastoma – thanks to one little boy named James and a family who fought so hard to save others.

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James made it his mission to fight the neuroblastoma that would kill him, helping to raise money to fund research into the cancer he was battling. When it became clear to him he wasn’t going to win his fight, he resolved to keep going, saying: “I’m always going to be fighting cancer.”

And he is.

Today, The James Fund for Neuroblastoma is one of the world’s leading funds funding research into neuroblastoma, one of the deadliest forms of cancers that there is. Scientists around the world are noticing the work done at the James Birrell Lab at SickKids, hoping that one day soon, a cure will be found.

And even Hollywood has taken note. Tom Hanks is the James Fund’s Honourary Patron.

Babble On Communications is profoundly grateful to have been part of the journey, and we will always keep our beloved friend James near and dear in our hearts.

We applaud the Birrell family who continue fighting to save the lives of precious children although nothing they do can ever bring James back. And we commend SickKids for the heart and vision they bring to their work every day. It’s been an honour to walk beside them all on the road towards a day where no child dies of neuroblastoma. 

To watch the CTV documentary, go to:

http://watch.ctv.ca/news/w-five/w-five-james-legacy/#clip152172

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Peter Zezel

A popular hockey player who played for a variety of teams, including the Philadelphia Flyers and the Toronto Maple Leafs, Peter Zezel was devoted to his family. Peter Zezel lost his battle with a blood disorder on May 26. He was 44.

Zezel had stayed active in the community, donating considerable time to children’s charities. Even in death, he gave to others, his organs donated so that others might live and have a better quality of life.

In lieu of flowers, the Zezel family has selected The James Fund as the charity of choice for donations. The James Fund is one of the leading funds in the world fighting neuroblastoma, one of the deadliest childhood cancers there is. 

Our heart is with Peter Zezel’s family for their loss and we commend them for thinking of the families with children battling neuroblastoma in their time of sorrow.

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The James Fund’s work with neuroblastoma families has made them increasingly aware for the need these families have to come together as they ride the roller coaster of this terrible disease.

The James Fund hopes families battling neuroblastoma will join them for a weekend of fun, relaxation, information and connectivity for the whole family. The event will be held from September 25-September 27 at camp Ooch. 

Neuroblastoma families currently in the fight, those in remission, and those who have experienced loss are welcome. Your family might included siblings, grandparents, aunts and uncles, your nanny or anyone else you identify as a key person in your child’s care and your family’s well-being. Please feel free to pass this invitation along to other neuroblastoma families.

There will be much cancer related and neuroblastoma specific information presented by SickKids researchers and other key medical professionals.

The weekend will offer activities for the whole family, including a supervised children’s program staffed by trained, adult camp counselors.  The kids will stay busy while the adults learn, share experiences, and network wtih other parents and professionals. 

There will also be some wonderful entertainment, recreation and downtime to enjoy just being together.

And there is no cost to you!

The program is being organized by The James Fund and its volunteers. The Retreat was funded by The James Fund Golf Classic in Peterborough, an event organized by Greg Anderson, Pete Lawless and their committee. it was sponsored by Anden Kitchen and Bath. The event was hosted by the immensely talented and dedicated Michael Burgess.  

For further information, please visit The James Fund at www.jamesfund.ca 

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Some of us find beauty in sound, and some in the absence of sound. Life these days seems so full of noise that a quiet place can be hard to find.  Camp Ooch, where we are privileged to attend the James Fund Retreat weekend each year, is one place with both true quiet and incredibly beautiful noise.

Entertainment at the Saturday evening campfire was headlined by The Howling Bluebird African Drummers, an elite troupe that formed for only one performance. What a joyful noise as our children chanted, drummed and danced. And what a blessing that the weather held, and the drums stayed outside.

Fire trucks. With big, blasting, air horns. Better than potato shooting, I’m told.

On Saturday evening, after the adult reception, my father and I were strolling back to our cabin in the cool, damp air. Ahead and on our right, an owl called. Then, without a whisper of sound, he flew right across our path, like a shadow across the moon. Wow.

Perhaps the most beautiful sounds of all were the sounds of families. The mealtime hubbub; the roaring of giants, mumbling of wizards and screeching of elves during game time; and the focused murmur as we tie-dyed our T-shirts were all so special, yet so ordinary. These little moments, they are the stuff of life. They are the moments that we’ve learned to cherish. Everyone should learn this lesson for free.

The most beautiful quiet? Sitting scattered around a room with other parents and family members, and being asked, ‘What is the most important thing that The James Fund needs to do?’ After a few moments of thoughtful silence, every person had the same top two answers. Number two: Support the families. Number one: Find a cure.

Faye Whyte is the mother of two beautiful girls, Sydney and Georgia who, together with Dad Scott, support The James Fund by raising awareness and funds for neuroblastoma research through Sydney and Georgia’s HOPE Fund (Helping People Every Day). To learn more, please visit Faye’s blog. 

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