Soldiering On

superheros

Andy and me, circa 1980. Superheros at heart. Though I was humiliated by the idea, I posed for this picture for my pesky little brother. The things I do for him. Always.

We measure time in intervals such as seconds, minutes, hours, years.  We measure time by important events that occur in our lives – anniversaries of births, weddings, graduations, deaths. On April 24, 2002, I lost my younger brother and only sibling, Andy, to cystic fibrosis (CF).  This is not an anniversary to celebrate, but it is one that I cannot escape; one I feel is important to acknowledge.

Ask anybody and I’m sure they’ll agree that eleven years is along time to support a cause in someone’s memory. Yet for almost eleven years, family, friends, and many who never even knew Andy have honored his memory by supporting me and my walk team, Roo’s Crew, in the Cystic Fibrosis Foundation‘s annual Nashville Great Strides Walk.

One might think that after many years of doing so, it would get easier for me to ask for support.  In fact it is quite the opposite — especially in light of recent tragedies in our nation and in these tough economic times.  Through these many years, some have asked why I continue to be involved when CF is no longer something my family and I have to face every day.   The answer is simple:  I carry Andy’s legacy of hope and faith that we will see a cure for CF in our lifetime.

Now more than ever, this dream is within our grasp.  Last year, the FDA approved Kalydeco® – the first drug to target the underlying cause of CF. This drug treats patients with a certain gene mutation which is present in roughly 4 percent of the CF patient population in the U.S. I am thrilled to report that patients who use this drug are seeing phenomenal results! In addition to helping that 4 percent of our patient population, Kalydeco® is proving to be a key partner to other therapies in the CF Foundation’s research pipeline. Phase 2 and Phase 3 studies of Kalydeco® in combination with two other compounds are  currently underway. The combined therapies are designed to treat the root cause of CF for patients who have the most common gene mutation. At the rate our therapies are progressing, the hope is that 65 percent of CF patients in the U.S. will have some kind of control for the basic defect by 2015. This is fantastic news, but we won’t stop until we have control for ALL of our patients.

Yes, we continue to soldier on. We continue to strive for a cure. But having drugs that will administer control over the symptoms and complications of CF will, in and of itself, be a miracle. When cystic fibrosis is no longer considered a life-threatening disease, our dream will finally be realized!

If you would like to support Roo’s Crew and the CF Foundation in our mission, please follow this link: http://www.cff.org/Great_Strides/BlakeLeyers8622.

To find out more about the Phase 3 and Phase 2 Kalydeco® combination studies, click here and here.

* WHAT:  2013 Nashville Great Strides

*WHEN:  Sunday, May 5, 2013 at 3:00 PM

*WHERE:  Bicentennial Capitol Mall State Park, Nashville, TN

Tribute to Andy 

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4 Comments

  1. abby mumford

     /  April 22, 2013

    that’s a lovely tribute to your brother. the love between the two of you was apparent in each photo, as it is in your words above the video.

    Reply
    • simplyblake

       /  April 24, 2013

      Thank you, Abby — for reading and for your thoughtful comment. It really means a lot to me. 🙂

      Reply
  2. Hi Blake. I’m Juliana , a mom to an 8-month-old baby boy with Cf, Eli, and his older sister Laila. I’m a journalist and blogger. Just wanted to say your tribute to your brother is beautiful. It made me cry! Keep fighting the good fight. I like your site. It is peaceful and lovely!

    Reply
  1. A beautiful life – This is Eli

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