Voice For Joanie founder Shirley Fredlund, 74, dies

New Milford woman helped hundreds of ALS patients

Photo of Sandra Diamond Fox

Whenever New Milford resident Shirley Fredlund saw a public space that wasn't wheelchair accessible, it wouldn't remain that way for long.

She would do everything in her power to get the problem addressed, no matter what it took.

"That's just the way she was. She couldn't stand injustice," said Fredlund's daughter, April Daryanani, 48, of Briarcliff Manor, N.Y. "She wanted fairness and equal access for everybody and wouldn't stop until she got it."

Fredlund, 74, died Sept. 30, 2013 from cancer at the Smilow Cancer Hospital at Yale-New Haven, with her husband, Frank Ruiz, by her side.

She will best be remembered for improving the quality of life of those suffering from amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

ALS is a neuro-degenerative disease that affects nerve cells in the brain and spinal cord. The progressive degeneration of motor neurons eventually leads to total paralysis and death.

Fredlund was founder and president of Voice For Joanie Inc., an all-volunteer, nonprofit organization that provides communication devices and technical assistance to people with ALS who have lost the ability to speak.

The devices are purchased with donations to the organization.

According to Ruiz, since Voice For Joanie was created in 1990, Fredlund has directly helped over 1,000 people. She gave those with ALS a voice that prolonged their quality of life.

"She had 72 patients she was helping right before she passed away," said Ruiz, 64. "For those who were unable to communicate with her on the phone, she would do the hands-on work to find a representative in their area to help them directly.

"People would call here seven days a week asking for help," he said. "Shirley would also call patients, to follow up with them and see how they're doing."

Fredlund, a mother of four and a grandmother of seven, founded Voice For Joanie after a close friend, Joanie Margaitis, was diagnosed with ALS while in her 40s and died four years later.

The friends communicated through a speech synthesizer and an IBM-donated computer system -- a device that can cost up to $17,000.

One of the newest forms of technology for those with ALS is an eye gaze system that lets those who are completely paralyzed communicate by blinking their eyes.

According to the ALS Association, approximately 5,600 people in the U.S. are diagnosed with ALS each year, and as many as 30,000 Americans may have the disease at any given time.

Ruiz, along with several other volunteers, will be taking over Fredlund's work at Voice For Joanie.

"My wife used to always say an expression she took from Audrey Hepburn -- "You have two hands. One to take care of yourself and one to help someone else," Ruiz said, while choking back tears.

"I lost my best friend and my love," he said.

Per Fredlund's wishes, her family will hold a celebration of life Oct. 19 from 1 to 3 p.m. at the Veterans of Foreign Wars Hall at 11 Avery Road in New Milford.

For more information on how to help those with ALS or to get help, visit www.voiceforjoanie.org.

Sandra Diamond Fox is a freelance writer in Connecticut; sandraifox@aol.com.