Monday, March 11, 2013

Great Strides 2013

Each year around this time, our family comes together to begin raising money for the Cystic Fibrosis Foundation’s Great Strides Walk. This is the annual 5K walk that serves as our big fundraiser to help find a cure for cystic fibrosis (CF). Our family has lived with disease for 11 years, ever since that December afternoon when my son Jacob was diagnosed with CF. When I say “family,” I don’t just mean my wife, Julie, our daughter, Sophie, and Jacob. I mean my parents, siblings and their respective families, Julie parents, siblings and their families, plus the hundreds of aunts and uncles, cousins, 2nd cousins, best friends and distant acquaintances from years past who have all given what they can to help us in our battle. These people, all of them, are family in some way. How else can you describe these people who have shown so much love and support for Jacob and our family?

With every new Great Strides campaign comes the task of writing a new letter asking people for money. Some years it is a great burden, as the weight of this illness can bear down on the psyche. Other years the letters seems to flow easily from my fingers because I’m inspired or because I am desperate, I’m never really sure. What I am sure of is that each and every year we have done a Great Strides campaign we marvel at the generosity of those people we call family.

It’s that time again in which I must reach out to all of you, my close friends, my Facebook pals, my work colleagues and or course, my blood relatives. I must reach out to you because, although there have been great strides made in discovering new treatments that may halt to progress of CF, these type of medicines do not effect all people with CF… not yet. But they are close, so very, very close. Someday within Jacob’s near future, a medicine could be available that will allow him to never have to do another breathing treatment to break up the sticky- life threatening mucus that forms in his lungs, that will allow his body to grow and be stronger, that will allow him to throw away the vest and the medicines that he hates so much (but must do to stay healthy) and that he’ll live a long and full life just like anyone else.

But it takes donations from people like you, and from the people you may forward this letter on to.
Each year at this time I put my heart on display for all to see. I have no pride as I plead for help to raise money for Great Strides. Any parent in my situation would do the same. I hope that you’ll consider following this link to the Malchus family CF Donation page and helping my son, Jacob, and all people living with CF. Someday that medicine will become available. Someday can’t come soon enough.

This year, Sophie has taken the initiative in creating her own CF page, in writing letters to her friends, and by working on our family fundraising video. I hope you will watch this video and feel the love that she poured into putting it together. My daughter adores her younger brother, as the pictures in this video show. And, like her parents, she will do anything to ensure that her brother lives a long and healthy life.

Thank you for your time and your continued support of our family and the Cystic Fibrosis Foundation.

Tuesday, March 5, 2013

Great Strides is coming

In the next day or two, I will begin my fundraising campaign for this year's Great Strides Walk in Valencia. We tried to come up with a new song for the Malchus family video, but each one chosen was either inappropriate, or Jacob nixed because he didn't want to "ruin" the song by having it become associated with CF.

As Sophie will attest, these songs become reminders of what we're fighting for when we ask for donations. Because of past videos, Sophie can no longer listen to "Here Comes the Sun" or Springsteen's "Workin' On a Dream" because they make her heart hurt too much. For that same reason, we didn't use the perfectly suitable Bruno Mars song, "Count On Me." Jacob loves that track, thanks in part to its use in the animated film, A Turtle's Tale (a movie that his dad just happened to work on), and also because it's just a wonderful song.

So, we chose to tweak last year's video (with the One Republic song intact) because it turned out so wonderful.  However, thanks to the hard work of Sophie the video was updated with some great pics from our once in a lifetime trip to Disney World and Give Kids the World.

Tomorrow I will post the video, along with my official fundraising letter. For now, enjoy the Bruno Mars song that got rejected, probably the only time that's ever happened to the immensely talented Mr. Mars. Here he is performing on Julie and Sophie's favorite talk show.