Our Group History Since 1992
Early Days of the Northwest Wisconsin ALS Support Group
Within a few months of his diagnosis, Lew searched for and found 6 other people with ALS (PALS) in northern Wisconsin. He often spent 10-12 hours a day writing to those PALS, to legislatures, to anyone he thought would listen. His “writing” was done by sitting in his wheelchair in front of his computer, holding a stick in his mouth, typing out one letter at a time. During Sally’s visits to his home, they would often call other PALS and their families. Neff would spell out words on a letter board, and she would relay the messages to the families on the other end of the phone.
Lew wrote to the National ALS Association and told them that his friend and former OT, Sally Krohn wanted to start an ALS Support Group in the Chippewa Valley. Two weeks later, he told Sally that she wanted to start a support group…….then that huge smile started to creep across his face and Sally knew she’d been taken.
“The lack of a local support group for PALS became Lew’s personal ‘battle cry,’ and he set about trying to rectify the problem,” Pat Pruss, former patient services coordinator with the Southeast Wisconsin ALS Chapter wrote in reflections about Neff. “He refused to let his disability get in the way of his quest. He often said, ‘Disability is a matter of perception. If you can do one thing well, you’re needed by someone somewhere.’
”Needless to say, Lew was not an easy person to say no to, so in February 1992, Lew and Sally, along with Ken Dunlap, Mary Beeler, and 7 other people met at the Chippewa Valley Bible Church for the 1st NW Wisconsin ALS Support Group. Ever since that first meeting, the group has provided support to hundreds of people — those diagnosed with ALS and other neuromuscular diseases, along with family and friends touched by the disease — through monthly meetings, a lending library of medical equipment, referral services, fundraising and more. Lew and Sally ran the group together until his death in 1991 and then Sally continued to run the group until 2004 when she married and moved out of state. During that time the group touched more than 180 ALS. In the years following Sally’s move, the Board of Directors first hired Shannon Berg, then Deb Erickson, then Julie Chamberlain and in 2017 Donner Meiers joined the Support Group as the Outreach Nurse. In 2017 Sally (Krohn) Sweet returned to serve as the Media Specialist for the NW WI ALS Support Group.
Sally and Lew met at HSHS Sacred Heart Hospital, where she worked as an occupational therapist at the time. “Knowing God was drawing” her to Neff’s family, she called his home several weeks after his therapy ended and asked if she could visit.
“We became fast friends, and my life was inextricably changed for the better,” Sally wrote. In addition to the monthly group meetings, personal support, lending library of medical equipment, the group has held a yearly Walk’n Wheel-a-thon, raising funds. Funds are collected by the Community Foundation of Chippewa Falls, but are directed directly to the support group and used entirely in the local area, except for those funds donated by the group for ALS Research.
A Residence Built of Hope By Traci Gerharz Klein- Leader-Telegram staff ~ December 6, 1998
Just this summer Sandy Gavin Martin could wrap her hand around a special utensil to feed herself. Her speech — while slowed and strained — was understandable. Now a caretaker feeds her, and her speech is slower and less clear.
Amyotrophic lateral sclerosis also is known as Lou Gehrig’s disease, after the famous baseball player who had it. It is a progressive degeneration of the nerve cells in the brain and spinal cord that control voluntary muscles.
The disease is robbing Martin of her ability to walk, eat and speak. The 53-year-old Eau Claire woman, who was diagnosed two years ago, knows ALS will lead to her death because there is no cure. Martin, who had caretakers come into her south side condominium 18 hours each day, knew she would not be able to live on her own forever. She feared ending up in a nursing home, where she didn’t want to be.
Fear turned into hope, though, when Sally Krohn — Martin’s friend and an occupational therapist at Luther Hospital — began talking this summer about her dream of opening a home for people in the last stages of ALS. Death usually occurs between two and 10 years of diagnosis. The home would be filled with amenities for people using wheelchairs and lifts, as well as caretakers who understand the needs of people with ALS, who end up with swallowing, speaking and breathing difficulties.
As Krohn began telling people about her dream, they joined her cause and helped raise $27,000. Lonnie LoKrantz, Krohn’s friend, said he and his wife, Barb, had no doubt it would happen. “If it was Sally doing it, it would go.” But no one knew it would happen this quickly and in time to help Martin, who was Krohn’s inspiration to find a home fast.
On Friday Martin was the first resident to move into PALS Community Home-Lew Neff Memorial at 1616 Folsom St., a gray ranch home on the city’s west side complete with four bedrooms for four residents. Krohn believes the ALS home may be the first of its kind in the United States. “On the day we got the home, I came in here and sat on the floor and just looked around,” Krohn said as she perched on a new floral couch and looked out a picture window in the living room. “It was the answer to my prayer.”
Major Lewis H. Neff, co-founder of ALS Support Group
Major Lewis H. Neff (U.S.A.F. retired), 53, of 5757 196th St., Chippewa Falls, town of Lafayette; died Tuesday, Feb. 17, 1998, at his home of ALS (Lou Gehrig’s Disease.) He was born June 21, 1944, in Baltimore, Md., to Florence (Lottridge) and Leonard H. Neff Jr, His mother died in 1954, and his father married Nancy Pope, who adopted Lew. He moved with his parents to Eau Claire in 1954 and they moved to Chippewa Falls in 1957. He graduated from Chippewa Falls Senior High School in 1962 and graduated Bom UW-Eau Claire in 1966. He enlisted in the U.S. Air Force in Jan. 1970, and served in Thailand where he was a navigator on B52 bombers in Vietnam. He also served in Michigan and California. Lew married Bonnie Williams on April 8, 1972, in Sacramento, Calif. In 1975, he joined the Air Force Reserves full time as navigator in C-5s and then as second seater (Weapons Systems Officer) in F-4 fighter jets (his passion), serving in California, Oklahoma, and Texas, until retiring in 1991) after 20 plus years. Lew and Joy moved back to Chippewa Falls in June, 1990, where they have resided since, where he was involved in home construction with his wife and good friend, Ken Dunlap. Lew and Joy Lynch were married Nov. 7, 1991, in St. Paul, Minn.
Lew was the co-founder of Northwest Wisconsin ALS Support Group (Lou Gehrig’s Disease) and enjoyed his association with members of Chippewa Valley Bible Church. In 1993, Lew was the Eau Claire Area MDA Volunteer of the Year and was the ALS Association National Volunteer of the Year, which is the ALSA’s highest honor. Lew devoted the last seven years of his life to raising the public’s awareness of ALS. A funeral service was held on Saturday, Feb. 21, at Chippewa Valley Bible Church, Chippewa Falls, with Pastor Andy Majorins officiating. Military graveside services at Hope Cemetery, Chippewa Falls, followed the service.