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.
Jen Weber’s Commitment to Living in the Moment
Jen Weber loves to play cello, travel, and do anything that gets her outside on a sunny day. She hasn’t let her CF, or either of her two double lung transplants stop her from doing what she loves. Today, Jen is thriving and working at the age of 44.
Exemplifying her outlook on life, Jen has a “YOLO” tattoo. “YOLO is about living life to the fullest,” Jen says. “Not that I need to be reminded that ‘you only live once,’ but when I see it, I am reminded of soaking up the present, of enjoying every moment, right now.” Jen notes that she can live life to the fullest due in part to the security she has found in planning for the future.
“From a young age, I was planning around breathing treatments and pills. Much like I turn to the CF clinic (and now my transplant team) for plans to support my health when I am doing well, I recognize that planning remains essential in all parts of my life.”
Planning has helped her accomplish her goals of going to grad school, pursuing a career, and traveling. As part of her planning, Jen prepared her estate plans and designated the CF Foundation as a beneficiary of her retirement plan. In doing so, Jen has communicated her values and dreams for a better future for all those with CF.
Leaving a gift to the CF Foundation in your will or trust or by beneficiary designation can strengthen your commitment to helping people with CF, like Jen, live full, productive lives now and in the future.
The Silverman’s Commitment to Fighting CF
“He was a fussy baby,” says Linda Silverman of her son, Andy. “No one suspected anything out of the ordinary until a recently graduated doctor suspected cystic fibrosis and ordered a sweat test.”
Andy began to improve immediately after starting treatment and stayed healthy until he reached his thirties. Now 44, Andy is awaiting a lung transplant and struggling to stay healthy, according to his father, Joseph.
“Andy’s type of CF does not respond to the newer treatments that offer relief to other CF patients,” says Joseph. “That’s why it’s so important to support the CF Foundation.”
The Silvermans are longtime supporters of the Cystic Fibrosis Foundation. In addition to making regular annual contributions and participating in Great Strides, Linda and Joseph recently designated a gift for the Cystic Fibrosis Foundation in their will. “There is still no cure,” Linda notes. “Everyone has to step up.”
“We plan to leave most of our assets to Andy and his sister, Julie,” Joseph says. “But we’ve also included a gift to the CF Foundation, which will include Andy’s share, should he pass away before us.”
While research is the Silvermans’ top priority, they left their legacy gift undesignated, “so the Foundation can use the money where it’s most needed,” Linda says. “Hopefully that’s a long way in the future, and who knows what the need will be. CF doesn’t get the attention that a lot of other diseases get, so we wanted to do our part.”
Leaving a gift to the Cystic Fibrosis Foundation, like the Silvermans, in your will, trust, or by beneficiary designation is an opportunity to communicate your values and your dreams for the kind of future you hope for children and grandchildren with CF.
Looking out for others became Heather’s legacy
A very special person to the Northern Ohio Chapter of the CF Foundation, Heather S. Collins, knew she wanted to make a difference now and well after her lifetime for people suffering from lung-related ailments.
She established the Heather S. Collins Living Trust as an expression of her philanthropic nature – and made a very generous gift to the CF Foundation in 2016.
Heather was a kind and generous woman of strong Christian faith. Although she struggled with lung disease throughout her life, she lived joyfully. She was always concerned about others and sympathetic to their daily challenges.
Heather visited friends and neighbors who were in the hospital or who had limited mobility, often taking a small surprise to them. Homemade lemon squares, Becker’s donuts or cherry pies were among her favorite surprises to give others. When she was unable to leave her home, she sent cards and notes to friends and family and kept an active phone and e-mail relationship.
Although she and her late husband Greg didn’t have children, she loved to hear about her friends’ children and grandchildren. Always interested in their activities, she remembered birthdays and celebrated graduations and weddings.
She was an avid Cleveland Indians fan, watching games on television and when her health permitted attending games at Progressive Field. On game day, she would don some of her extensive Indians gear and settle in to cheer the team on. Summer would find her gardening or driving her red sports car. She dressed colorfully and began every day with a smile and a sense of adventure.
Her greatest desire was that a cure be found for her lung disease. To that end, she remembered the Northern Ohio Chapter of the Cystic Fibrosis Foundation in her trust. The CF Foundation is eternally grateful for Heather’s legacy gift, and for the inspiration she provided to so many.
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.