Cystic fibrosis fundraiser in Saratoga Springs honors victim of disease

PHOTOGRAPHER: Tatiana Zarnowski

Through 41 years of suffering from cystic fibrosis, Donna Crandall rarely asked for anything special or even told co-workers of her disease.

But a few months before she died in 1999, she told her sister-in-law that she wanted to be remembered after she died.

“She said, ‘I’m not afraid to die, but I’m afraid that people will forget me.’ ” Her own daughter, Kerianne, was 15, and the four children of her sister-in-law, Lisa Cheney, were very young.

After Crandall died, Cheney honored her promise to remember Crandall. She and her siblings, including Donna’s husband, David Crandall, decided to make gift bags to give to cystic fibrosis (CF) patients at Albany Medical Center in Donna Crandall’s name.

They initially started raising money within the family to buy Beanie Babies and Game Boys for children, and other items for adults.

“We put things in them that Donna would have liked,” Cheney said, such as marshmallow chicks and Mike and Ike candies. “I don’t know if the patients realize it, but it’s our own family’s remembrance.”

They’ve given away 950 bags to patients at the cystic fibrosis unit at Albany Medical Center, one of six such centers in the state.

Ten years ago, the family started an annual fundraiser, Emerald Eve, so named in honor of Crandall’s Irish roots. Her maiden name was Murray.

“It started out as a little family get-together,” said Dawn McGuinness, a CF patient from Niskayuna and a volunteer at the Donna M. Crandall Foundation. Now 350 people attend the ball annually at the Canfield Casino, and the event raises $100,000 a year. In 10 years, the foundation has raised over $1 million total.

This year’s 10th anniversary gala takes place at 7 p.m. Nov. 13 and includes a large silent auction.

The Donna M. Crandall Foundation dedicates $50,000 a year to helping local families of CF patients with expenses, such as traveling outside the area for medical care and paying bills that may pile up while the patient is out of work in the hospital. It also pays for TV and phone service at the hospital, as well as cafeteria vouchers.

“If you’re in need and they can help you, they will,” McGuinness said.

Cystic fibrosis is an inherited chronic disease that children are born with, and their bodies produce a thick mucous in the lungs and pancreas that makes it difficult to breathe and digest food, according to the National Heart Lung and Blood Institute website. Children are often skinny and malnourished because their bodies can’t absorb the nutrients they need, and they suffer from frequent infections.

There is no prevention and no known cure.

Families of CF patients who die often donate money to the foundation as a way of saying thanks for the help they were given.

“I’ve literally seen dads cry with relief,” McGuinness said of families who get help with a mortgage or other expenses. “To have somebody looking out for our day-to-day needs and challenges is just really special.”

Donna Crandall lived in Scotia and worked for Ayco for almost 20 years. Family members say she worked right up until three days before she died.

She didn’t tell many people about her lifelong disease, not wanting to get special treatment. At one point she needed a feeding tube, and wore it like a pocketbook on her shoulder, disguised, Cheney said.

Cheney, of Loudonville, said Crandall was a private person who would probably be “overwhelmed” that the foundation was named for her.

However, “I think that she would be thrilled that we unconditionally help families.” Cheney is the vice president of the foundation, while David Crandall is the president.

McGuinness first heard about the foundation after it was founded, when she had to stay at Albany Medical Center for treatment.

“They gave these amazing gift bags to CF patients who were in the hospital,” she said. Hers contained a portable DVD player, a popular book, magazines, toiletries and snacks, all things to help boost a person’s spirits while in the hospital for a week or more.

CF patients typically undergo several hospital stays a year.

“At my age, people think it’s just life, and they stop sending cards or gifts or flowers,” McGuinness said.

Other gift bags are made especially for children, with more games, picture books and toys.

“They change it according to the season,” McGuinness said. “They get to know you, so they try not to repeat what they put in the gift bag.”

She later became a volunteer with the organization.

“I’ve seen a lot of people suffer,” said McGuinness, 44, who was diagnosed with cystic fibrosis at age 13, very late for a CF sufferer. People with the disease are born with it.

Now, doctors can test a fetus for CF before it is born, she said. When McGuinness was a child, the definitive test was a sweat test to measure the amount of salt in the sweat, and a small hospital that first did the test on her made a mistake.

As a result, she was misdiagnosed for years, so she realizes she is fortunate to have lived as long as she has and to be in relatively good health now.

In the 1950s, few CF sufferers lived long enough to enter kindergarten, according to the foundation. Now, with new drugs and more aggressive treatment, many can live into adulthood, as Crandall did.

If you go

What: The 10th annual Emerald Eve, a fundraiser for a local cystic fibrosis organization.

Who: Donna M. Crandall, for whom the foundation is named, died in 1999.

When: 7 p.m. Nov. 13

Where: Canfield Casino, Saratoga Springs

How much: $100 per person

Tickets: from Lisa Cheney, 453-6369, or visit donnacrandallfoundation.org