Day 20: A Cure for Will

Tonight Brian and I attended the Dealing for Duchenne's fundraiser. This is the third year we have attended and supported the efforts of these diligent parents working to find a cure for a deadly disease that affects their beautiful sons.

Duchenne Muscular Distrophy only affects boys. Not sure why, but only boys. A missing gene contributes to muscles not developing and eventually the body breaking down and ending in death. There is no cure for Duchenne. No cure for a disease that is so ugly.

Amy & Chris Martin are our friends, neighbors, and community members and we love their entire family. We met years ago when their son Derek and our boys Harrison & Spencer all played baseball at Cheviot Hills Park. Those were some fabulous days watching all our boys play great baseball. Now they've all moved on to High School. The Martin's also have a beautiful younger daughter, Natalie, and son Will who has Duchenne.

The Martin's are desperate to find a cure. While it's not much, we believe that attending and giving what we can is our way of showing support for their beautiful family while also hopefully contributing to finding a cure.

If you are wondering whose in that picture with me above... it's Super Bowl Champs, Green Bay Packers football star Clay Matthews and gal pal Lisa Martin.

Clay is a huge supporter of finding a cure for Duchenne and was gracious enough to take pictures with all the fawning women who couldn't wait to get their arms around him! He's quite a hunk both in his physic and in his heart for giving his time to help eradicate Duchenne.

Kudos to him and to Amy & Chris for being such wonderful parents, friends, and fundraisers for a very important cause. To learn more about Duchenne or to make a contribution in honor of Will Martin, please visit www.cureduchenne.org.

Day 55: Our Sons - Curing Duchenne's Disease

Brian and I attended a charity fundraiser last night for Cure Duchenne. This is the second year we have attended. We are invited by our community friends Chris & Amy Martin. The Martin's have three beautiful children. Derek, their oldest son, Natalie, their middle child, and Will who is 8 years old. A few years ago Will was diagnosed with a very rare disease: Duchenne Muscular Dystrophy. The disease ONLY affects boys. The boy's bodies break down by the time these children hit their teens and many pass away before the age of 20. There is no cure for this horrible and mind boggling disease. How could you expect parents to raise their babies into toddlers and into adolescents all along knowing that they are going to die before they hit adult age? How cruel can the world be?

The Martin's are beautiful people who with enormous generosity and hopes of finding a cure for their son have launched Dealing for Duchenne as a yearly fundraiser. The goal is that well needed resources raised at this benefit will fund new research to find a cure for this very rare disease. Up until recently there has been NO treatment available for boys in the Southern California area who battle this ugly disease; forcing families to travel across the country to the few institutions conducting studies to fight Duchenne. Of course this is prohibitable for most. So the Martin's have provided hope to many families in our area because now there is a treatment center at UCLA to work with these boys to find a cure.

Pictured here is Will (left) sitting on his Mom's lap, Amy Martin, Ann Heche and her husband & Son, and Chris Martin (far right), Will's dad.

While the evening is festive with a silent auction, great entertainers, and a lively live auction, the undercurrent tale is that these parents are fighting to keep their children alive. It's unimaginable to me that they look into their son's eyes all along knowing that they won't see adulthood. Thank goodness for parents like the Martin's and all the others who are working diligently to find a cure to save their children and countless other young boys. This was an evening that Brian and I were so proud to support. Maybe next year you too will join us and help keep Will and others alive?

To learn more about this disease, visit www.CureDuchenne.org