Running Out of Love and Gratitude

Time is a precious commodity.  It is defined as the measurable period during which an action, process or condition exists or continues.  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 an event occurred that forever changed my life; I lost my younger brother and only sibling to cystic fibrosis (CF).  It is difficult to believe that April 24, 2012 is the tenth anniversary of Andy’s passing.  This is not an anniversary to celebrate, but it is one that I feel is important to acknowledge.

For nearly ten 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.  While Roo’s Crew will once again participate in the Nashville Great Strides Walk (*see event details below), I will be doing something different to acknowledge this anniversary and the incredible support we’ve received over all these years.  On Saturday, April 28, 2012, in tribute to Andy and as thanks to all who contribute to the CFF through Roo’s Crew, I will be running the half marathon portion of the Country Music Marathon.

One would think that, over time, it would get easier for me to ask for your support.  In fact, it is quite the opposite – especially 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.  And I am overjoyed to say that this desire, this mission was tremendously validated in late January when the FDA approved the new drug Kalydeco®.    Please read more about Kalydeco® at www.cff.org

There are myriad reasons why you can feel good about contributing to the Cystic Fibrosis Foundation; one being that nearly 90 cents of every dollar goes directly to research, education and care programs.  Whatever your reason and whatever the amount – for no amount is too big or too small – I would be tremendously honored by your support.  To make an easy online tax-deductible donation, please click the GREAT STRIDES widget in the right sidebar, then choose “CLICK TO DONATE”.

If you would like to join Roo’s Crew at the Nashville Great Strides walk, just follow that same link and click “JOIN MY TEAM”.

With love and gratitude,

Blake

* WHAT:  2012 Nashville Great Strides 

*WHEN:  Sunday, May 20, 2012 at 1:00 PM

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

Your Voice Counts!

A Message of Hope and Proof of Concept

On March 8, 2012, my friend Marissa and I joined dozens of other advocates from across the country in Washington D.C. to talk with our nation’s Senators and House Representatives about issues important to the cystic fibrosis (CF) community.  What a thrill it was to go to Capitol Hill on the heels of the FDA’s approval of Kalydeco®; the first medicine to treat the underlying cause of CF for 4% of the CF population (those who have a certain mutatation in their CF gene called the G551D mutation).   Additionally, Kalydeco® has created a road map that will extend to treatment for 100% of CF patients.  Dr. Margaret Hamburg, FDA Commissioner, and Dr. Robert Beall, President and CEO of the Cystic Fibrosis Foundation, hail this as a huge step forward for both personalized medicine and for CF treatment.

Me, Congressman Jim Cooper, and Marissa
March 8, 2012
Image by Cystic Fibrosis Foundation

CFF Agenda

Like last year, we met with our legislators to explain how the National Institutes of Health (NIH) and Food and Drug Administration (FDA) play critical roles in the search for the cure for CF, and why it is so important that funding to these two institutions continues.  Since our meetings, a record 150 co-signers signed onto Congressman Ed Markey’s letter supporting funding for the NIH in Fiscal Year 2013.

Additionally, the CFF’s public policy agenda for 2012 seeks to expand rare drug expertise during the FDA review process.  On March 7, the day before our advocacy meetings, Congressional CF Caucus Co-Chairs Representatives Edward Markey (D-MA), Cliff Stearns (R-FL) and Tom Marino (R-PA) introduced the “Expanding and Promoting Expertise in the Review of Rare Treatments (EXPERRT) Act,” in the House of Representatives. This legislation aims to enhance the FDA’s rare disease drug review process by including systematic consultation with experts and patient advocates.  Consulting with rare disease experts will ensure that the FDA has complete information, allowing drugs to move through the pipeline quickly.  Kalydeco® is an excellent example of this process.  It was granted approval in approximately three months, making it one of the fastest FDA approvals ever.  Simply put, the EXPERRT Act will make best practice standard.

You can help!

Marissa and me at Rep. Blackburn’s office

One of the most enlightening things I learned while in D.C. was that every phone call, every letter, every email gets counted and noticed by our Representatives.  The information gathered in those communications is the baseline those offices use to know what is going on.  Please join Marissa and me in helping CFers and countless others with rare diseases.  Tell your lawmakers to support the Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act of 2012! Your members of Congress will support the bill if they hear that it is important to you, your friends and your family. Email your legislators today and urge them to support the EXPERRT Act!

Please click here for the quickest, easiest way to make your voice count.

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