What would you do if your child only had 30 years to live? The answer is simple. You would walk to the ends of the earth to find a cure. This Sunday, more than 1,000 North County residents will attempt to do just that. On May 6 families, friends and local corporations will gather at the Powerhouse Park in Del Mar and walk a three-mile route along the beach in hopes of finding a cure for the 30,000 adults and children afflicted with cystic fibrosis. Cystic Fibrosis is the nation's leading chronic, progressive and fatal genetic disease. Currently the average life expectancy is only 37. There is no cure. However, the Cystic Fibrosis Foundation is hoping to change that.
Fifty years ago a child born with CF would not live long enough to attend kindergarten. Today adults with CF are graduating from college, getting married and starting families of their own. This is due entirely to the hard work and visionary efforts of the CF Foundation. An accredited charity of the Better Business Bureau's Wise Giving Alliance, the CFF is the world's leader in the search
for cystic fibrosis. While relatively small in comparison to other charities, the foundation funds more CF research than any other organization. It is also one of the most efficient. More than 90 percent of all donations raised goes directly toward the development of new drugs to fight the disease and ultimately to find a cure.
Last year, walks across the nation raised nearly $38 million for CF medical research. This year they have set a very aggressive goal. To increase it by another $2 million. That is because they want to continue the momentum they have worked so hard to achieve. At the end of January this year, Vertex Pharmaceuticals, located in La Jolla, released a newly FDA approved medication (Kalydeco) that essentially fixes" CF for 4 percent of the population. For the first time in any disease history, a drug was developed that attacks the underlying cause and not just the symptoms. Never before has there been so much hope in the CF community. Currently, Vertex has two more drugs in their laboratories that hold the promise to fix CF for the remaining 96 percent of the population. Other companies such as Pfizer and Genzyme are following suit.
The CF Foundation claims that "While Kalydeco represents a breakthrough for patients with the G551D mutation, it also represents hope for all people with CF." And that in a nutshell is what Great Strides is all about. For our family, the event is all about emotion. Good ones. Initially we were was hesitant to walk for our son, Sean, who was diagnosed at the age of two. We thought it would be a painful reminder of our his disease. But Great Strides is everything but that. It is a celebration of life, a token of gratitude for all the progress that has been made, a silent prayer for all those who have lost their battles and a collective effort to make a difference int he lives of teh 30,000 adults and children living with the disease today. In other words, it is all the best things in life. Quite literally, it is hope in action.
The San Diego CF Foundation will be hosting three walks this month. Two are coming up this weekend:
- May 5th - Escondido - Escondido, Kit Carson Park
- May 6th - Del Mar/Moonligh Beach - Del Mar, Powerhouse
- May 29th - San Diego, San Dieog, DeAnza Cove (Mission Bay)
Teams range in size from a handful of walkers to large corporate teams to gigantic crowds of family and friends. And that is one of the reasons why I love Great Strides so much. Life is hard. Sometimes there are no easy answers. But the beauty of it all is that we don't have to do it alone. Great Strides is about sharing the journey. To give you a better idea about what this event means to my family - specifically my son - last year, Sean and I had a discussion about lung transplants which is often a choice CF patients have to make in the end stages of the disease. His actual words that afternoon were, “Mom, sometimes all of this seems like too much.” As you can imagine, there is no good answer to a statement like that. So, I took a long deep breath and told him. “I can’t promise to know what lies ahead for us. But I can promise that I will be with you every step of the way.” I wanted to reassure Sean that we would never be alone in his fight against CF. But, of course, my son who likes to think too much for his own good, asked, “But what happens after you die.” There was so much I wanted to say in return. Because after all that is the hope – that my son will outlive me. But instead, I simply walked over and showed him a picture of our Great Strides team from the year before and told him that all those people will be with him every step
of the way. That he was loved. And as I spoke, I could literally see relief wash down Sean’s body. The people who showed up to support him with Great Strides were exactly what he needed in that moment. And their support is exactly what he will need to keep on fighting for a better future. Great Strides is so much more about raising money and walking for a cure. It is about willing to believe in something bigger than ourselves. It's about extending a hand in support. And telling my son (and 30,000 others like him) that he is not alone.
It is also about hope. Hope for a future that is in our grasp. Ironically enough, our family will be walking in the Del Mar Great Strides (May 6) the day before Sean's 14th birthday. We can't think of a better way to celebrate Sean's life, as well as the hope for a better future for 30,000 others like him living with cystic fibrosis. It isn't hard to imagine what Sean will be wishing for as he blows out his candles. His grandpa, who shares the same birthday as Sean, will be sitting next to him making that very same wish. But then again, if enough people join our family on the 6, the two birthday boys just might have everything they have ever wanted. And all their wishes will one day come true. I know I will be watching them and making my own silent wish - for Sean to be able to celebrate his birthday with his own grandson one day. After all, that is the real reason why we walk. And that is also why will will continue to walk to the ends of the earth and back. For Sean. For love. For hope.