Legacy Donors Like You
The search for a one-time, permanent cure for cystic fibrosis becomes part of your life story when you make your legacy gift to the Cystic Fibrosis Foundation. By leaving a legacy gift to the Cystic Fibrosis Foundation, these special friends, like you, created their legacy of adding tomorrows to the lives of those with cystic fibrosis.
Anne gives in honor of her grandson and finding a cure
Anne’s grandson, Graham, has cystic fibrosis and fights every day to maintain his health. She knows that the Cystic Fibrosis Foundation is one of the most efficient organizations of its kind and that researchers are making discoveries that will lead to a one-time cure.
Although the CF cause is very near and dear to her, it goes beyond that. She’s met and gotten to know other grandparents and families of people with CF. After discussing the decision with her daughters, Anne updated her plans to include the Cystic Fibrosis Foundation in her will and family trust.
“At a young age, I was taught, ‘What we keep we lose; only what we give remains our own.’ I make these gifts in honor of Graham and in the hope of finding a cure for everyone living with CF.”
Martha’s devotion to the CF cause
“Our family has been able to take some big hits, yet there’s a strength that carries on.”
Martha Atherton’s family knows all too well the devastation that CF causes to those with the disease and their families. At just four months old and born in the 1950s at a time when there weren’t many treatments for CF, her first son, Robert David, succumbed to the disease.
Their loss fueled their desire to take action against the disease, so she and her late husband Bob began volunteering with their local CF Foundation to raise awareness and funds. Bob joined the chapter board, which he served on for 25 years.
Their second son, John Curry, who does not have CF, became a big brother when their third son, Richard Hillary, was born. Richard was diagnosed with CF shortly after birth and passed away at age 13.
Today, Martha and her family continue to find hope and solace in their support of the CF Foundation, and even decided to arrange a charitable trust to benefit the Foundation after their lifetimes.
“We know that the CF Foundation is a very well-run and highly rated organization…It’s a good feeling when you hear that people are living longer and are able to do more things they enjoy.”
A Life Devoted to His Wife and Her Memory: Meet Bill Beck
Bill Beck met his future wife, Wendy — who had cystic fibrosis—in college. The two music students fell in love and tied the knot in 1971.
“Back then, little was known about CF — and what we did know was heartbreaking,” says Bill.
During their marriage, Wendy and Bill frequently attended CF fundraisers. “We wanted other families to see Wendy, a healthy adult woman with CF, so they would have hope for the future.”
Bill persuaded his company’s board of directors to establish a golf tournament to benefit CF research. Sissy Boyd, Executive Director of the Texas Gulf Coast Chapter, shared, “Not only did Bill and Wendy give personally but they mobilized others to give.”
Wendy benefited from the research investments made by the Foundation. While her parents were once told she wouldn’t live to celebrate her third birthday, Wendy lived to be 61. Eight years ago, Wendy passed away but her efforts continue to inspire many.
“Wendy was one of the most remarkable people I’ve ever known,” recalls Sissy. “She was always positive—a magnet for people. It’s no surprise then that Bill continues to support the CF Foundation in honor of Wendy.”
Every year, Bill makes a donation in Wendy’s name — and he’s decided to leave a legacy gift through his trust to the Foundation, with the balance going to family. “I want to see life expectancy for people with CF become the same as everyone else — basically, to find a cure. I’ve seen such improvements in my lifetime, so I have hope. And I get a lot of satisfaction knowing that I am leaving a legacy to a good cause and helping to make progress after my lifetime,” he says.
Leaving A Legacy of More Tomorrows
When Thomas’ daughter Brandi was born, she weighed only four pounds, five ounces and she struggled. He she was born that they were in for something difficult. “But, we were lucky,” Thomas recalls. “After 18 months, I could see she was going to be healthy — we had gone through the toughest part.”
Brandi is 33 now and has a family of her own but Thomas has never forgotten that feeling — the fear he experienced when she was born. As a way of expressing his gratitude for his daughter’s health and acknowledging that he had only begun to understand the struggles of parents of children with chronic diseases like CF, he became involved in the CF Foundation.
“Being a part of the Foundation has given me so much more than I could have ever imagined. That is why my wife, Nanette, and I have made a commitment to people with cystic fibrosis for years to come by making a legacy gift, an enduring statement of our values.”
As president of the Board of Trustees of the Indiana Chapter, and as someone who has come to know and love the community of families touched by CF, Thomas is committed to supporting the search for a cure for cystic fibrosis and better treatments now, and in the future.
“We are hopeful there will be a cure before our legacy gift goes to the Foundation, but if not, we want to know that the effort to find a cure will continue. To us, a gift in our trusts is the continuation of what we do on a daily basis — try to give back.”
Honoring Her Son and Healing Hearts: One Mother’s Story
“I have dedicated my career to helping people with cystic fibrosis ever since my second child, Jonathan, was diagnosed at 8 weeks of age,” says Patty Burks. “When Jon Jon was alive, my life seemed to revolve around his frequent hospitalizations and demanding care schedule. Even as a stay-at-home mom, I struggled to be there for him and to focus on my other children, Daniel and Bekah,” she remembers.
Jon Jon, the boy who could play chess by kindergarten and poker by first grade, who loved big dogs and girls with long hair and who, more than anything, loved to make people laugh, died in 1993 at age 11. “The loss of my son felt at times like more than my heart could take. We as a family hurt and we as a family grieved.” Over time, Patty found the loss changed her as she became committed to seeing this disease cured. She wanted to be a part of the solution, and within six months, enrolled in classes to prepare for nursing school.
“Health care professionals kept our family’s heads above water so we didn’t drown in the sorrow. They helped me cope — which in turn enabled me to help my surviving children. When I considered becoming a nurse, I thought, “What an honor to be part of such a high calling.” Eventually, she was hired as a cystic fibrosis research coordinator at Washington University School of Medicine (Wash U.). “At Wash U., we did the Kalydeco study that brought what some call a “wonder drug” to market. I can’t tell you what it meant to me to make real progress on this disease. I know firsthand that real people need real drugs, and they don’t have time to wait.”
Today, Patty serves as the director of clinical trial affairs at the CF Foundation, where she helps support the 82 CFF-accredited Therapeutics Development Centers and the clinical trials team.
She’s spent her career working for a cure, she’s still not content. “I want to remember Jon Jon in a more enduring way. I don’t want his name to be only in the hearts of those who loved him and on a gravestone. I want his life to stand for something more. I want to remember him in a way that makes a difference for others.” That’s why she has made the CF Foundation a beneficiary of her life insurance policy.