Sunday, April 14, 2013

An Impassioned Plea

Our 2013 Fundraising Letter

Our son Drew is 3 years old and he has Cystic Fibrosis, a life shortening genetic disease for which there is no cure. This year, as we begin our annual fundraising, we wanted to share with you two things that are driving our efforts this year. One is a Cystic Fibrosis conference we attended a couple weeks ago which I'll talk about below.  The other is the wake that we recently attended.  Alicia, a local 20 year-old girl with Cystic Fibrosis, passed away a few days ago.  She had been very sick for a few years and was literally on her death bed in February when she got the call that all of us who knew her and her family had hoped for - new lungs became available for her. Alicia was going to receive her life-saving double lung transplant. It seemed that she was given a new lease on life. The surgery went reasonably well, though things got a little dicey in the days immediately after.  Still, the day we left for our conference in D.C., I spoke with Alicia’s dad, who said that Alicia was getting stronger every day.  When we came back from D.C., we found out that a couple days after we left, she got an infection that she just couldn't fight. Her entire body had become so worn down from living with Cystic Fibrosis for 20 years. Just when we thought that she had found a way to beat CF, the disease won.  When we saw Alicia’s father at her funeral services and asked him how he was doing, he fought back his tears and told us "I lost my baby girl".  It was impossible for me to not think about myself in that same position someday. As heartbreaking as Alicia's passing is to us, we know that there is hope for a better future for Drew.  

A couple weeks ago, we spent some time in D.C. and Virginia working with the Cystic Fibrosis Foundation.  Our first day there was spent on Capitol Hill meeting with congressmen and their staffers to talk to them about the Foundation's policy agenda.  We met with the offices of 5 representatives and both senators from Ohio.  It was interesting and exciting, both to know that we were advocating for our cause and because we were able to meet some other remarkable folks from the CF community who share our passion for the cause. I’ve been working as the State Advocacy Chair  for a while now, and our day on the hill convinced me of the importance of getting even more involved.

The second part of our trip was spent at the Cystic Fibrosis Foundation’s Volunteer Leadership Conference.  There were more than 400 people there, about half volunteers and half foundation staff from around the country.  Simply: it was inspiring.  Several things became very clear to us:

·  We are at a critical moment in the search for a cure for Cystic Fibrosis.  Recent advancements and successes make clear that a cure is possible (
·  There is still much work to be done.  Currently 4% of the population benefits from a breakthrough new Cystic Fibrosis drug, Kalydeco.  Unfortunately, Drew's not in that group.  As many as another 91% of CFers could benefit from next generation advances.  Drew would be among those people, but it will take several years and hundreds of millions of dollars, and success is not guaranteed.
·  I can and must do more to find the cure for Drew.

We met some remarkable people at the conference who have made it their personal mission to do everything in their power to help find a cure.  We came away with a lot of things to think about.  Of course, most of us can do very little to help with the science.  Really, there are two things that we can do: raise money and advocate.  It is crucial work, the foundation relies on it and we recognize that we have to do better.  We truly appreciate everyone that has donated and walked with us at Great Strides in the past.  In order to accomplish what we must accomplish, more is needed.  I'm sending you this letter because I want to ask you to join me, to help me and more importantly to help Drew. 

The foundation is set to invest twice as much in drug research over the next three years as they have in the last three - they're literally doubling down.  That means we need to double our results and that will require a bigger network of donors.  Money buys science and science buys more tomorrows for Drew.

This is our impassioned plea. Our fundraising goal this year is an ambitious one, but with the support of our family, friends, and all of you, hope that we will be able to reach. We want to raise $30,000 this year for Team Doin’ It For Drew. We are asking that you consider your giving capacity and help us in whatever way you can. 

Thank you for taking the time to read about our life with Cystic Fibrosis. We truly appreciate any and all support that you can offer. 

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