April, 2011 – Making Strides in Curing Cystic Fibrosis

AW Spotlight

On April 30^th at Wellington’s Village Park at 8:30am, supporters of a good cause will come together and make strides against Cystic Fibrosis.  Event organizer Karen Gray says, “It’s an exciting time.  We are very close to finding a cure!”

The fight against cystic fibrosis (CF) has come a long way. Cystic fibrosis is a fatal genetic disease that affects the lungs and the pancreas.  In 1955, when the first local chapter of the Cystic Fibrosis Foundation was founded, kids suffering with this condition usually did not live beyond the age of 5. Because of advancements in research and medicine, people are making great strides; today the median survival age of people with CF is 38.

A typical day for a child suffering with CF is waking up and wearing a vibrating vest for about 45 minutes (to clear out breathing passages). A child with CF will do another 45 minute session later in the day. He or she will also need to take up to 65 different enzymes, so that food can be absorbed in the pancreas. In addition to this, a child with CF will take aerosol medicines through a nebulizer about twice a day. It’s a life that’s full of complications and challenges, yet it’s so much improved from just a generation ago.

Local business woman Linda Windsor was moved by the urgency of the cause, so she founded a team which will walk on April 30^th, the PrePaid Legal South Florida team. “We’re showing that PrePaid Legal cares and we like to help with different community events,” says Windsor. In her own family, she had a cousin who had a daughter who struggled with CF and passed away at the age of 18. Her cousin, the girl’s father, went on to become a respiratory therapist.

The day of the Western Communities event is going to be filled with outdoor activities, in addition to the actual walk. “It’s really a celebration of the fundraising accomplishments to date,” says Karen Gray. There will be a mounted patrol, the Home Depot Kids Club, 97.9FM broadcasting, the Renegade dance team with their line dancing, a fire truck and more!  Registration is at 8am and the walk begins at 8:30am on April 30^th, the race day. The walk is actually just a short walk, not even quite a 5K. So it’s an easy family-friendly walk. For more information about the CF walks in general, visit www.cff.org.

Unfortunately for those suffering with cystic fibrosis, their battle draws less attention than some of the other life-threatening diseases and thus, does not always receive as much of a spotlight when it comes to research.

“We’re really different in what we’re doing,” says Gray. “We actually buy the research. Bigger organizations like Scripps and others want to work on cancer. With cystic fibrosis, we hire our own scientists.” All of the funds that are raised go directly toward this research. And 90 cents of each dollar goes directly for that research, while just ten cents goes toward operating expenses.  Those involved in the Cystic Fibrosis Foundation are proud to say that they “operate on a dime.” 

Both Karen Gray and Linda Windsor were touched by the efforts of Mary Weiss, who founded the Palm Beach chapter of the CFF organization in 1965. Weiss became a volunteer for CFF after finding out that all of her three little boys had CF. It became her mission to call every local civic club and seek financial support for CF research. Her 4-year-old son at the time Richard was listening intently as she pursued this cause. “I know what you are working for,” he said. “You are working for 65 Roses.” Mary was speechless, surprised that he knew what she was working on and smiled at his way of saying Cystic Fibrosis. Since then “65 Roses” has become a common way to refer to the disease by children, since the words are easier to pronounce.

Windsor met Mary Weiss eighteen years ago, when (in a different career) she was selling insurance to Weiss, who was realizing that she had a long stretch ahead with three boys, all affected by cystic fibrosis. Karen Gray heard Weiss speak about three years ago. “She touched my heart,” says Gray. She saw an opening at the CFF organization for a special events coordinator shortly after that and knew that it would be a great fit for her, something she could believe in and make real progress at.

Windsor wrote a brief letter to some of her colleagues, explaining her commitment to the Great Strides event. “This April I have made a commitment to lead a team in the Great Strides Walk . . . to raise money for the Cystic Fibrosis Foundation. They are doing some great things and getting very close to preventing this genetic disease.  If you’ve never been around someone with it, you just can’t imagine these children not being able to get a good, deep breath – ever.  It makes life such a struggle and all too short in many cases.” To join Linda Windsor’s PrePaid Legal Great Strides team for the Western Communities walk at Village Park in Wellington, contact her directly at 561-762-1667 or email lwindsor@prepaidlegal.com.

Here are other ways you can help advance CF research, as mentioned on the site cff.org. 

1. Make a Donation – Money buys science and science buys life.
2. Join a CF clinical trial.
3. Contact your local CF Foundation chapter and volunteer. Learn about the many special events that raise the money to keep the science moving ahead!
4. Become an Advocate and raise awareness – help educate your elected officials about CF.