Thursday, September 27, 2012

"BallouSkies Update"

Click here to visit the BallouSkies website

I had a rare mid-week day-off from work yesterday.  So, after Laura's pancake breakfast, Luke and I attended a Ballou Skies meeting at PLB Sports headquarters.  I am part of the Ballou Skies Triathlon Team, and I consider it a privilege and an honor to be part of a team comprised of so many dedicated and elite triathletes.  However, the Ballou Skies' mission is so much more than triathlon.  Our mission is to raise awareness, hope, and funds for the battle against Duchenne Muscular Dystrophy.  Our mission is led by Ty Ballou, who is also the CEO of PLB Sports.  His son, Ryan, has been inflicted with DMD since birth.  Ty's passion and perseverance are easily recognizable when he talks about Ryan and Ballou Skies.  Ryan's optimism is evidence of his unwillingness to allow DMD to control his life.  Despite needing a motorized wheelchair to get around, Ryan continues to work towards a college degree, while also being employed at Stage AE on the North Shore of Pittsburgh.  Ryan is now 24 years old and continues to show that he lives an independent life on his own terms.

2012 Ballou Skies Triathlon Team

When Luke and I arrived at PLB Sports, we were warmly greeted by Ryan and Sherry, PLB's administrative assistant.  Luke was being shy at first, but quickly warmed-up.  He really liked Ryan's wheelchair. :)  Ryan and I talked about his job at Stage AE and how the schedule of shows slows this time of year.  Ty was quick to come and greet us, and we met Merrett, Ty's daughter and Ryan's sister.  We met many other Ballou Skies' friends, supporters and board members, as well as Dr. Jill Rafael-Fortney and Dr. Subha Raman, from the team at the Ohio State Heart Clinic.  I was happy Luke and I were there and was looking forward to learning more about the DMD research.

From Left to Right: Dr. Rafael-Fortney, Ty, Ryan, Dr. Raman, Me & Luke
(Luke was still checking out Ryan's wheels)

Luke and I took our seat next to Ryan in the conference room.  I thought Luke would be able to sit with me, but once he saw there were buttons on Ryan's wheelchair, he would not sit still.  I had to turn him over to Sherry to read books and play with cars.  Thanks Sherry! 

Dr. Raman began with a brief history of the work that has been done to date.  She recalled how quickly things have progressed since 2007 with the help of Ballou Skies.  She spoke about how the "stars aligned" to produce progress that is unheard of in the medical research field.  With the success of Ryan's ground-breaking treatment, many other boys with DMD have been getting MRI's of their hearts to track the scarring caused by DMD.  Presently, the research team is trying to get the remaining balance of 40 boys to begin a 12 month double-blind randomized research study that will monitor the effects of Spironolact, a heart medicine, on reducing scar tissue that can accumulate on the heart muscle as a result of DMD.

In addition to the detailed account of the research, Ty spoke from time to time.  You could see the passion in his eyes.  He spoke about how difficult the trips to Columbus for Ryan's regular MRI's are.  He spoke about the fear of the possibility that things could look worse this time.  However, he concluded that each car ride home is the greatest car ride because Ryan's heart continues to be strong.  We also heard the story about the young boy and his parents that came to Columbus all the way from California for his first MRI.  When they arrived at the hospital, the boy was too scared to go through with the MRI.  They arranged for Ryan to talk with the boy on the phone, and Ryan was able to calm the boy's fear so that he was able to complete the MRI.  As I sat there and listened, I was inspired by the commitment, passion, and courage that the people in the room had for this cause that could some day really truly help so many boys with DMD.

As the meeting concluded, I asked for a picture with Ty, Ryan, Dr. Rafael-Fortney, Dr. Raman, and Luke and Me in front of the HOPE poster that accompanied so many other Ballou Skies posters in the room.  Of course, they were all more than willing to be in the picture.  It confirms that we're all part of a winning team, and while Ryan continues to live everyday fighting DMD, the reality is that he has already won.

Until there's a cure, Ballou Skies...

The HOPE that accompanies the passion and courage.


  1. Ben--your latest blog post is very inspiring, as it provides a perspective on what matters most in our short lives: commitment to one another to promote the welfare of all persons. This will likely inspire you to continue to compete and train with BalouSkies. It will assuredly inspire Lucas to become a research scientist and world-class physician! No pressure from the Pap Pap here though. LOL Keep up the great work and keep learning! Dad

  2. Ben - I truly enjoyed reading your blog. How amazing it is to be part of such a profound and inspiring organization. Together you can spread awareness and make a difference in the lives of many. It is a reminder to us all that each of us can have a positive impact in another person's life if we are willing to take the first step. You have joined an amazing team of people and have taken many steps in the right direction. I wish you all continued success and look forward to the next update!