Alabama ALS Chapter receives charter
Special to the Ledger
Source: Enterprise Ledger
Wednesday, December 12, 2007
The national office of The ALS Association has added to its national network of chapters by granting a charter to the Alabama Chapter.
The organization, based in Huntsville, Ala., became formally affiliated with The Association in 2004, and since then has worked to build and expand its programs and services.
The chapter helps Alabamians affected by ALS, and also offers support to out-of-state family members and friends desperate for information about this fatal, progressive, neuromuscular disease.
The ALS Association values a commitment to excellence, integrity, a diversity of ideas and a teamwork mindset, The national office saw these qualities reflected in the Alabama organization, and recently granted it full chapter status in recognition of its growth and development.
“The Alabama Chapter has made great strides to provide programming and support of the mission of The ALS Association throughout the state of Alabama. We are very proud of their progress and ongoing commitment,” said Marilyn Simon-Gersuk, vice president of patient services at the national office.
The chapter builds confidence and a feeling of independence by not crossing a certain line when helping people with ALS (amyotrophic lateral sclerosis), also commonly referred to as Lou Gehrig’s Disease.
“We know that that people with ALS are people first and they are not exclusively ‘ours’,” said Deb Kohlhase, executive director of the Alabama Chapter at The Association.
“We do recognize that people with ALS have other facets to their lives, and a unique history of living all their own that does not involve ALS. Honoring that truth and avoiding a sole focus on the present ALS is a way to see, understand and remember the real, whole person. We are here to support living with ALS, but not to dictate how that is to be accomplished.
“We offer a broad range of services to enable people with ALS to maintain independence and retain dignity. We recognize that each person’s situation is unique. Although we provide information and guidance, we respect the decisions that people make in concert with their family and caregivers.”
The chapter’s predecessor, a volunteer-driven, local grassroots ALS support group that operated out of people’s homes in Huntsville, Ala., recognized the same values in The Association after a delegation from the group attended The Association’s National Advocacy Day and Public Policy Conference in Washington, D.C., in 2004.
Among those attending Advocacy Day were Bonnie McDonald and Stuart Obermann, both of whom had seen a loved one stricken with the disease. While in Washington, D.C., the delegation saw first hand the ability of The Association to make a difference in the lives of people with ALS.
That was a turning point. The group realized to meet the needs of people living with ALS throughout the state, they would need to expand. They realized the Association was the one organization whose capabilities in advocacy, patient services and research could help them take the next step in fighting the disease and helping families in Alabama.
Especially strong in the areas of patient services and advocacy for such a young chapter, rapid growth quickly followed as word spread about its innovative services and programs, entrepreneurial spirit and responsive, compassionate care and family approach.
The backbone of the chapter is the men and women who donate their time and do not expect anything in return except the satisfaction of knowing their efforts have resulted in an improved quality of life and hope for people living with ALS.
“I can say that we are blessed to have dozens of dedicated volunteers, led by the board of directors who help advance the goals of the chapter in myriad ways,” said Kohlhase, born and raised in Warren, Minn., a small town about 60 miles from the Canadian border.
The Association is the only national not-for-profit health agency dedicated solely to the fight against ALS. The organization has a national network of 41 chapters.
~Best viewed with a positive attitude~