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Join the Paul di Sant'Agnese Legacy Society
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Join a community of people who share your passion for ending cystic fibrosis by becoming a member of our Legacy Society.
Meet Ashvani Singh
On January 28, 1989, Ashvani Singh stepped off a plane from India and onto U.S. soil for the first time as he formally began his career in CF research. “The very next day, I got a call from my wife who told me, ‘You have a son.’ It still brings tears to my eyes. Because I didn’t want to lose my fellowship, I had to travel while my son, Amrit, was being born. My arrival marked an important moment in my journey, professionally and personally.”
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That fall pioneering scientists discovered the CFTR gene, putting the CF research trajectory on an entirely new plane. “We researchers had our work cut out for us,” recalls Ashvani. “Many scientists at the time said we were crazy, that we would not achieve anything. But we stayed focused.”
Ashvani has spent more than three decades working tirelessly on scientific research that provides new therapies – and hope – for the cystic fibrosis community. Today, he spends his free time cooking and listening to his wife Sangeeta, who is a classically trained singer. This past summer they watched their son, Amrit, walk down the aisle and celebrate a big milestone when he married the love of his life, Leesa.
Together, Ashvani and Sangeeta have pledged their long-term commitment to the Cystic Fibrosis Foundation by leaving a gift in their will.
“I’ve given everything I have in terms of the science. As long as I’m alive I want to do all I can to help those living with this disease, and when I’m not here, I want my support to continue. My car’s license plate is registered as ‘CF Cure’ – I want to put a ‘d’ at the end.”
Ashvani Singh is a Senior Principal Research Scientist at AbbVie. He received his Doctor of Philosophy (Ph. D.) in Medical Chemistry from Central Drug Research Institute, Lucknow in India and has over thirty years of experience in the pharmaceutical industry in the field of cystic fibrosis drug development.
Meet The Barry Family
In 1996, Amy Barry was up in the middle of the night comforting her sick newborn son, Jamie, when she caught a news segment on television about two young parents who had established their own medical research foundation to help their sons afflicted with a rare fatal disease. Just ten days later Jamie was diagnosed with cystic fibrosis.
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“I immediately reached out to these parents seeking their guidance on how to create our own research effort,” recalls Amy. “I soon received a reassuring letter back from them, telling me that we were fortunate to already have the gold standard of rare disease organizations on our side: the Cystic Fibrosis Foundation.”
Amy and her husband, Peter, dedicated themselves to helping the Foundation in any way possible. Shortly after meeting with then CEO, Bob Beall, whose visionary leadership would change the course of CF, Amy joined the national board of trustees. There, she had an early peek into the promising developments underway. “Peter and I began to imagine what was possible,” Amy said. “We told ourselves that if this succeeded, we would
commit ourselves to helping other parents of children with rare diseases fight for their futures.”
In 2019, the Barrys watched Jamie take his first dose of the newly released therapy Trikafta®. “Within hours, Jamie began to experience the benefits,” said Peter. “We were so grateful, but we understood that Jamie’s solution would not work for everyone with CF. It became clear that our job was to pay it forward within our own CF community, and fight for other CF families still looking for an effective therapy.”
Over the years, the Barrys have been major donors, active board members, public policy advocates and ardent fundraisers for the Foundation. Last year, they turned their focus to legacy giving and joined the Paul di Sant’Agnese Legacy Society after learning about a national matching gift opportunity offered by CF community member, avid supporter and CF grandmother, Bonnee Binker and her family.
“It was an easy decision. Legacy donations are future monies that will help end CF,” reflects Peter. “We were lucky to get a therapy that has worked so far for Jamie – we’ve had a taste of normalcy. The entire CF community deserves to feel this way.”
Larry and Gail Ortegren — Grandparents as the Ultimate Champions
Larry and Gail Ortegren have dedicated their lives to their three grandsons with CF: Colton, who is 13, Caleb, who is 10, and Reed who is 7.
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“They know they have CF but they don’t let it stop them, and we can’t either,” Gail shared. “We want them to have full lives, including having kids of their own. We feel it’s our duty as grandparents to be involved.”
Larry and Gail have been involved for many years as fundraisers with the Nebraska Chapter, serving on the Board of Directors, and most recently, joining Grampions and becoming Legacy Society members.
“We’ve even made the CF Foundation a beneficiary of our retirement accounts in their honor,” said Larry. “The boys are still going to have CF when we’re gone. Until then, we’ll continue to do what we can to help them.”
We also hope you will join the Legacy Society by leaving a gift in your will, trust, or by beneficiary designation like Larry, Gail, and many others have done. Your gift can help ensure CF will someday stand for Cure Found.
Jonathan McTague — Inspiring Tomorrow’s Leaders
When Jonathan McTague attended middle school, he met his best and lifelong friend Lindsey. While Jonathan always knew Lindsey had cystic fibrosis, it was when they both entered college that it became even more apparent.
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“Lindsey landed in the hospital and my friends and I went to see her,” he said. “We decided in that moment to do all we could in the fight against CF.”
Together, their Boston-based crew began holding fundraisers to advance the CF Foundation’s mission. For Jonathan, it was the beginning of a journey that he is still on today. He currently serves as the Tomorrow’s Leaders Chair for his local chapter, where he taps into a network of young professionals to help spread awareness and raise money.
“Our generation wants to move the needle and do good,” says McTague. “A lot of people mistakenly think that you need to have millions of dollars to make an impact – that’s just not true.”
Most recently, Jonathan decided to make a planned gift to the CF Foundation by naming the Foundation a beneficiary of his 401(k) plan. “Legacy giving is a moment to show my support and offer a lasting reflection of my values.”
Jonathan’s hope is that one day there will be a cure for CF. And on that day, he dreams of giving Lindsey a big hug and a high-five. “Tomorrow is not guaranteed for anyone. And if I’m not around on that day, at least I know I did all I could to help people like Lindsey living with CF – and that my legacy remains.”
Meet Clay Snellings — A Father’s Determination
Clay Snellings has been involved in the fight against cystic fibrosis for over 20 years. The proud father of three remembers the day his daughter and youngest child, Emily, was diagnosed.
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“We became very internally focused as a family after that diagnosis,” he recalls. “We did our best to help Emily live the most normal life possible. Despite her challenges, we always shared a sense of optimism.”
At age 12, Emily’s lung function started to decline which resulted in more frequent hospitalizations. Clay and his wife, Lori, soon got involved with the CF Foundation, participating first in bowling and golf events, and eventually helping start Insure the Cure, an alliance with the insurance industry of Atlanta, which has raised since its inception more than $2 million.
The Snellings tenacious support and that of all our dedicated community have helped lead to several breakthrough treatments over the past decade. When Emily began taking the first triple combination modulator therapy, Trikafta®, her lung function climbed to the 40s and her health improved.
Clay’s personal involvement has grown in his role as Board Chair for his local chapter, which enables him to connect and learn from other CF families while sharing new fundraising ideas. Recently, Clay and Lori also became Legacy Society members by including a gift to the Foundation in their will.
Today Emily is about to graduate from the University of Georgia with a master’s degree in accounting and has a job lined up at Deloitte. While she is living a full life, her father dreams of the next breakthrough for his daughter.
“Scientific research is incredibly expensive. With legacy giving, you are putting a stake in the ground for the future by perpetuating the Foundation’s mission for a very long time. That’s important for Emily and for all those living with CF.”
Jenna Baier — A Family’s Investment in the Future
On December 18, 2017 Jenna and Jeremy Baier received a phone call that would change their lives forever. It was their adoption case worker, who had exciting news to share – two little girls, Azalea and Jersey, were ready for adoption.
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“The call came on Jeremy’s birthday,” Jenna recalls. “Three days after Christmas, they were home with us, and we have been going full force ever since.”
Going full force is not something Jenna has ever shied away from since being diagnosed with cystic fibrosis at 17 months. As a child Jenna swam and did gymnastics, and in college, she became an avid golfer while pursuing a degree in business. Today the 36-year-old busy mother of two enjoys not only golfing – but crafting, gardening, and caring for their Labrador, Phoenix, all while working as an associate financial representative alongside her parents at Northwestern Mutual.
Jenna initially became involved in fundraising for the CF Foundation through the annual golf and cycle events, and now is the Annual Fund Chair for her local chapter and a monthly donor. “We know the impact of fundraising firsthand,” says Jenna. “Once I began taking the therapy Trikafta®, I saw my lung function increase by 15 percent.”
“It takes a great deal of time to bring new treatments to market, so it was an easy decision for our entire family to become legacy donors,” reflects Jeremy. “We want to be sure there is enough funding for the long term.”
Jenna and Jeremy along with her parents Jim and Diana Brown, recently made the decision to join the Legacy Society by leaving gifts to the CF Foundation in their wills. Jenna too is focused on the future. “It’s important to have plans in life, and my dream is to watch Azalea and Jersey grow up and to grow old with my husband. I want to be part of that story when a cure is found.”
“It takes a great deal of time to bring new treatments to market, so it was an easy decision for our entire family to become legacy donors.”
– Jeremy Baier
Meet Jon Bottorff — Hope Fuels Remarkable Progress
When Jon Bottorff’s son, Eric, was diagnosed at six months old – the doctor told Jon and his wife, Mary Kay, that their child would not likely live long enough to attend college. Yet the couple believed in a brighter future for Eric and decided to do all they could to help advance research efforts.
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For close to three decades, Jon and Mary Kay have been involved with the CF Foundation, volunteering with national advocacy and community outreach efforts, joining their local chapter board of directors and attending local events, and even serving as major donors during the Milestones I and II fundraising campaigns.
Today, Eric is 38 and about to celebrate his sixth wedding anniversary with his wife, Robertha. “As a young man, Eric would dive into his books but was reluctant to expand his life experience because of the implications of having CF,” recalls Jon. “That is, until he met Robertha – the love of his life. Eric is now hopeful about his future due to the incredible scientific progress the CF Foundation continues to make.”
Jon and Mary Kay decided to become members of the Legacy Society by leaving a gift in their will to the Cystic Fibrosis Foundation. “We value planned giving because it will take time to find a cure – and it will take significantly more resources. It’s important for us to offer support that will be there in the long run– until there is a future without CF.”
For close to two decades, Brany Binker donated to the Cystic Fibrosis Foundation without having any direct connection.
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“While most people may have tossed the thank you items aside that we received over the years – we saved every single item,” said Bonnee Binker, Brany’s wife. “The day our newborn granddaughter, Delaney, was diagnosed with CF – we gathered all the items – the teddy bears, calendars, the pens and blankets. We knew from the beginning we were meant to be part of this story.”
Bonnee immediately reached out to the Foundation. She led passion fundraisers, Co-Chaired the 2018 Volunteer Leadership Conference, and today acts as national Grampions Chair. Most recently, Bonnee joined the Foundation’s Legacy Society. For her, it is all part of what she knows she is meant to do as a grandmother.
Today, 10-year-old Delaney is thriving. When she is not immersing herself in anime art or practicing her swimming– she is busy researching companies she loves like Build-a-Bear.
In 2020, Bonnee decided to offer a national Grampions Legacy Society Match with the support of her family and friends at the Delaney Binker Family Cure Cystic Fibrosis Miami Foundation which helped recruit 90 new members of the Legacy Society in just four months. “We wanted to encourage people to think about new ways of giving,” says Bonnee.
To Bonnee, legacy giving helps ensure the important work of the Foundation can continue. “There is nothing I wouldn’t do for Delaney, and through the Legacy Society our story can be told forever.”
The Matlock Family Legacy of Adding Tomorrows
The Matlock’s greatest loves in life are clear: family, friends, and the Seattle Seahawks. The commitment and dedication they have for the Seahawks carries through much of their lives and holds true in their support of the Cystic Fibrosis Foundation.
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The Matlock’s greatest loves in life are clear: family, friends, and the Seattle Seahawks. As unwavering Seahawks fans, Bob and Sue always stick by their team and follow every game. The commitment and dedication they have for the Seahawks carries through much of their lives and holds true in their support of the Cystic Fibrosis Foundation.
Bob’s commitment to finding a cure for cystic fibrosis dates back to 1942, when the first of his three sisters died from the disease. “In 1942, the doctors thought my youngest sister, Aretha Jean, died of whooping cough. It wasn’t until later when my other two sisters also died, Theresa in 1952 and Venita in 1971, that doctors identified their illnesses as cystic fibrosis,” Bob explained. “In memory of my three sisters, I have been a lifelong supporter of the Foundation and am so happy to see the progress that has been made since ’42.”
Bob’s parents were early supporters of the CF Foundation in Seattle, and one of the organizations earliest fundraising events, the Breath for Life Campaign. “My parents always wanted to do more for children and families with cystic fibrosis. In memory of my sisters, Sue and I have chosen to follow in their path.”
In addition to supporting the Foundation with annual gifts, Bob and Sue have left a gift to the Foundation in their will. “We want to make a difference and help the CF Foundation continue the good work.”
Leaving a gift to the Foundation in your will, trust, or by beneficiary designation is an opportunity to communicate your dreams for future generations and help all those with CF life full, productive lives.
“In memory of my three sisters, I have been a lifelong supporter of the Foundation and am so happy to see the progress that has been made since ’42.”
– Bob Matlock
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.
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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.”
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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.
“Andy’s CF mutations do not respond to existing therapies that effectively treat other CF patients. That’s why it’s so important to support the Foundation.”
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.
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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 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.
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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.”
“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.”
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.
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“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.
“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.”
– Bill Beck
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.”
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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.
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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.
“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.”
– Patty Burks