Among the thousands of charities researching cures and rebuilding disaster areas, fighting homelessness and feeding the hungry, there is a nonprofit with close ties to Siena College. The Donna Crandall Foundation helps families deal with cystic fibrosis (CF), a genetic disease affecting the lungs and pancreas for which there is no cure, by assisting with financial costs associated with the disease. Much like Donna’s alma mater Siena College, the foundation also provides a supportive community.
Donna Crandall ’79 was diagnosed with CF when she was four. At that time, doctors told her parents she probably would live for another six years at most. Donna took medication and regularly visited a clinic to stay healthy. Her younger brother Kevin Murray ’81 said that each night before bed, Donna sat in a small mist tent that eased her breathing. While Donna was much more limited than other kids when it came to activity, she still went to school, played with friends and took family vacations.
“She wouldn’t accept anything other than a normal childhood,” Kevin said. “In fact she demanded it.”
After high school, Donna attended Siena College. One of the reasons she chose Siena was that she would be close to Albany Medical Center, which had a CF treatment facility. Donna was a good student, organized and hard working, Kevin says. He and his big sister were very close and he followed her footsteps by attending Siena as well.
“I think my arrival was a bit of a disruption for her,” he says laughing.
While at Siena, Donna met David Crandall ’79, a fellow history major with whom she shared mutual friends, and they began dating. When Donna told David that she had to go to the clinic one day, David asked if he could go with her. She said yes.
David recalls how they sent each other letters during the summer because he lived in the Capital Region and Donna lived on Long Island. There were no cell phones or Facebook accounts back then, and long distance calls were expensive, so their romance relied on snail mail.
“It was exciting when one of Donna’s letters would arrive,” he said.
The relationship blossomed and led to a marriage proposal offered and accepted. David and Donna settled down in the Capital Region. Donna worked as a manager for a retirement services group at Ayco Company, LP, for nearly 20 years and David worked in education as a teacher, administrator and principal. They raised a child, Kerianne, who is now a chemistry teacher in England.
Throughout her life, Donna did what the doctors initially told her she couldn’t. She graduated from college, fell in love, got married, raised a child and enjoyed a fruitful career.
David says that Donna never had those philosophical conversations that people sometimes have when they are sick. She simply had a spirit that moved her forward and dealt with the disease and everything it threw her way. A couple of years before Donna passed away, she and David drove to New York City to learn about the possibility of a lung transplant. After that visit, they wondered how people without good jobs and insurance dealt with the cost of health care. It seemed that everything was a drain on family finances – medication, hospital stays, parking and driving to and from consultations in major cities.
After Donna’s death, David and his siblings decided to do something that would honor her memory. They created a charity in her name, which would help families with ancillary costs associated with CF treatments. This would not be an organization fundraising for a cure, like the Cystic Fibrosis Foundation, but rather a place that patients could turn to for financial assistance.
They started by inviting 40 friends to David’s sister Terri’s house in Saratoga and asked everyone to bring small gifts to put in bags for CF patients undergoing treatment at the hospital. These goodie bags became synonymous with the Donna Crandall Foundation. Every patient who was admitted to Albany Medical Center would receive one of these tote bags with things like candy and snacks, books and magazines, hand-held games and Walkmans (in the early days) and now iPods. The Foundation has paid for renovations of the CF waiting room at Albany Med so families can relax when their loved ones undergo treatments. At other times, the Foundation has paid families’ insurance premiums and mortgage payments.
In time, the inaugural dinner at Terri’s house became the Donna Crandall Foundation’s Emerald Eve, an annual event for CF patients, their families and friends, and the Foundation’s signature fundraiser. The 2012 Emerald Eve raised about $140,000. The video that debuted at the event featured Kayleigh Marcella ’15 and her younger brother Scott, who both have CF. Siena Trustee John Murray ’79 was given the 2012 Burke Bear Award for his longstanding commitment to the Foundation.
In the video, Kayleigh and Scott spoke about their connections to the Donna Crandall Foundation. Both received $1,000 scholarships upon high school graduation to pay for college textbooks. They also spoke about the new drug that has benefitted them greatly, Kalydeco. It is a pill taken twice a day that helps with the effects of CF. It is only available to about 5% of CF patients because it addresses a specific gene mutation. It is also very expensive, costing $24,500 a month.
Kayleigh says that she was skeptical about Kalydeco at first but, having taken it since April 2012, she now calls it a miracle drug.
“My life has changed for the better,” said Kayleigh, who has been breathing easier ever since. “Knowing there’s something out there like Kalydeco gives me hope that we can find a cure.”
The Donna Crandall Foundation is operated by David, his sisters Lori Jenkins ’84, Lisa Cheney and Terri Snow, and his brother Bob with no administrative costs; they are all volunteers. Their board meetings are held at the dinner table and they each lend their talent. Lori graduated from Siena College with a degree in accounting. She owns Strategic Solutions Management, a medical practice consulting and physician billing firm, so she set up the Foundation’s 501(c)3 nonprofit status and handles its finances. Lisa manages most of the day-to-day operations.
To date, the Foundation has raised $1.75 million and distributed 1,300 goodie bags.
In 2009, David was awarded the Professor Egon Plager Award for accomplishments in advancing the welfare of other human beings at Siena’s Distinguished Alumni Awards ceremony. He is now retired from teaching and continues to honor Donna’s memory by helping people in need.
“We’re not going to stop anytime soon,” he said.
The Foundation has made such an impact that other people are now holding fundraisers of their own to benefit the organization. There have been snowmobile races, bike rides and swim-a-thons that raised thousands of dollars.
Grateful as they are for the support and committed as they are to helping CF patients and their families, those close to the foundation wish that its days were numbered.
“We hope for a cure and that someday we’ll be obsolete and people won’t need us anymore,” Lori said.