At 8am on May 1, 2010, Team Charlie assembled at San Francisco’s Crissy Field to commemorate the musician, athlete, and friend, Charlie Stockley. He had been a high functioning Cystic Fibrosis patient living well into his late 30s, yet his health declined very quickly and he passed away on December 24, 2006 before a transplant became available to him. As Ana and Isa were friends with Charlie and his mother for fifteen years, this deep loss spurred them to fight even harder for CF research. Charlie’s mother, Allison, carries on her son’s legacy through Team Charlie at Great Strides each year.
Other teams rallied around friends and family members with CF, including many children and young adults living active and healthy lives despite their disease. Great Strides takes place all over the country throughout May (Cystic Fibrosis Awareness Month) to promote funding for local CF organizations. Cystic Fibrosis Foundation hosts the event each year to bring together CF families for a public stand towards much needed research. Hundreds of people gathered in the bright sunshine to rally around their loved ones with CF, ready to “Make Great Strides to Cure CF” towards the Golden Gate Bridge and back.
At 9am the walk began. We set off for the Golden Gate bridge in the company of Team Charlie and other friendly teams around us. Walking along the scenic San Francisco Bay gave everyone a chance to chat and mingle while soaking up one of The City’s finer spring days. Within an hour we were beneath the iconic red bridge enjoying the company of CF patients, advocates, and supporters all in high spirits. We were especially glad to run into Sherry Mirshahi of Cystic Fibrosis Services Pharmacy, a sponsor of Great Strides. We look forward to working more closely with community partners like this one as “The Power Of Two” production gains momentum.
When we returned to Crissy Field, participants loaded up their plates and ate lunch together in the park. It was a great chance for the more isolated CF families to surround themselves with others that can relate to their situation. With old friends and new, we relaxed in the grass and played double dutch. When things started to wind down, the film crew and the Stenzel twins headed over to the Palace of Fine Arts for a lakeside recap of the day.
Sitting in the grass with the impressive SF landmark as a backdrop, Ana and Isa explained the importance of Team Charlie. Isa’s CF story shares much in common with Charlie’s, as both were living full, active lives with advanced stage CF until suffering a rapid, life threatening decline in the same year. Isa received a lifesaving transplant and it was expected that Charlie would also receive new lungs, yet after 12 days on a ventilator in the hospital, no donor lungs became available. The twins explained how this loss was extremely hard for them to rationalize and it caused them to question God for a long time. Ana and Isa struggled with difficult questions of why some people live and others don’t in the unfair battle against CF.
Ultimately these are the trials that spur Ana and Isa to advocate CF research and organ donation awareness with such fervor. CF affects only 30,000 Americans and funding for research is limited. With increased research, better medicine and treatments may prevent future CF patients from reaching an advanced stage that requires organ transplant. This is the hope of Ana and Isa as they advocate CF awareness, and this is at the heart of what we are trying to do with “The Power Of Two” movie.