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The ALS-St. Louis Chapter Honors Florissant Man and His Family
For more than seven years, Florissant resident Kenny Alber worked with his hands as a carpenter and construction worker building new houses for two home builders. Today, the neurodegenerative muscular disease ALS (amyotrophic lateral sclerosis) has robbed him of his talent, yet Alber refuses to allow ALS to keep him inert. Commonly referred to as Lou Gehrig’s Disease, ALS usually has a survival rate of two to five years from the time of diagnosis.
Alber, 37, has lived with ALS since February 2003. Despite experiencing difficulty with his speech, he remains active and relies on a motorized wheelchair for mobility. Alber’s family members assist him with daily living activities. His wife Darcy, 45, who has worked in the medical field for 17 years, serves as his primary caregiver. The Albers also work closely with The ALS Association’s St. Louis Regional Chapter in fundraising efforts and in spreading awareness of Lou Gehrig’s Disease.
The St. Louis Regional Chapter has proclaimed the Albers the family that best exemplifies the spirit of “ALS Across America” for the chapter in Eastern Missouri during ALS Awareness Month in May. The “ALS Across America” national campaign recognizes courageous individuals with ALS and their caregivers who are role models to people with Lou Gehrig’s Disease. These special individuals reflect the spirit of the organization as they make a positive difference in their community by expanding awareness of ALS and embodying the spirit of living life to the fullest.
“Kenny has a strong determination to ‘live’ life with ALS,” said Sharon Gacki, the chapter’s education, awareness, and advocacy director. “He inspires others because of his ability to continue to be upbeat and personable. He is a friend to many. Fighting for a cure and possible treatments of ALS is his purpose; it is what keeps him going.”
Alber has received assistance for breathing from a ventilator since June 2008. He and Darcy have two children their son, Josh, 8, and daughter, Kency, 5. Alber received his ALS diagnosis when his wife was pregnant with their youngest child. The youngsters help their parents either in spreading awareness of ALS or in taking care of their dad. Josh presented a report to his fellow grade school students in 2008 about ALS and his father. In addition, Josh’s school, Russell Elementary School in Hazelwood, did a fundraiser to support the Albers last year at McDonald’s in Florissant.
Kency works as her dad’s “little nurse.” She feeds Alber through a feeding tube and knows how to assist her father when his ventilator’s alarm sounds.
Since 2003, the Albers have lead a walk team for the chapter’s annual Walk to Defeat ALSTM, which raises funds for local patient services programs and research to find the causes and a cure for Lou Gehrig’s Disease. The family has also worked with local companies to get fruit donated to the Walk. In addition, the Albers participate in the chapter’s “S.O.S. List” which provides their contact information to other patients and caregivers for assistance and support and have distributed the red rubber ALS awareness bracelets to Darcy’s co-workers as well as to other family members and friends.
“Darcy told me a story of a man recently stopping to talk with her in a grocery store where he asked her about the ALS bracelet that she was wearing,” Gacki noted. “It turned out that this person’s father had died of ALS. Darcy and this man talked for about 30 minutes about living life with ALS and the impact the disease has on people and their families.”
Throughout May, The Association and its nationwide network of 42 chapters will reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join.
The Association’s National ALS Advocacy Day and Public Policy Conference, which has grown to be the single largest gathering of the ALS community, and is part of ALS Awareness Month, will be held this year on May 10-12 in Washington, D.C. The Albers plan to continue their year-round awareness efforts on a local level in May.
“Kenny and Darcy are more than willing to go the extra mile for ALS education and awareness,” added Gacki. “They are always ready to educate others about the disease and the challenges they and their family face daily.”
