In January 2006, several individuals in Northwest Arkansas watched their friends and loved ones die the quick and horrible death of ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig’s Disease, is a neuromuscular disease for which there is no known cure or prevention.
After dealing with the grief of losing her husband, Steve Kressen, to ALS, Sylvia knew she had to act. “I wanted to do something to honor my wonderful husband Steve and to be there for others with ALS,” she says. “I knew all too well that caring for someone with ALS is a 24/7 job and yet I recalled the love, support and friendship that helped Steve and our children through to the very end. I had to do something; I had to be there for others facing the ravages of this disease. I knew that they needed all the support they could to maintain a high quality of life as long as they could.”
Sylvia Kressen and a few volunteers whom she had recruited tried to establish a Northwest Arkansas ALS chapter. The legal requirements of incorporating, generating fiscal procedures and creating a nonprofit organization were overwhelming. Some of the fledgling organization’s initial volunteer leaders had to drop out for one reason or another. While Sylvia had good business experience, she had no experience with nonprofits. Sylvia turned to Northwest Arkansas SCORE.
In the beginning, the Northwest Arkansas ALS Chapter had no board of directors and no funds with which to operate. Now, with the help of their SCORE mentor, the ALS chapter has formed a board that provides leadership and personal involvement. Using basic fundraising techniques, the ALS chapter has raised funds for patient services, education and awareness. It is building its fiscal capacity so that it can employ full time staff dedicated to meeting the needs of ALS patients in Northwest Arkansas.
Sylvia says, “We have done so much.” Patients had no one to go to for encouragement and answers, but now a support group meets monthly with 30 members. ALS patients often didn’t know how specialized medical equipment could improve their quality of life or how to acquire such equipment. Now, through the generous help of an Arkansas Rotary Club and the Rotary Medical Supply Network in Tulsa, Okla., a free medical equipment loan program has been developed. ALS patients’ special speech needs were not being met, and now they have regular access to Dr. Barbara Shadden of the University of Arkansas Speech and Language Department.
Sylvia says, “We would never have succeeded without the help of SCORE. When I had a question, SCORE helped me find the answer. When our board members needed leadership, our SCORE mentor met with them one-on-one. When our fundraising efforts were slow to start, Bill showed us how to be successful.”
Doug Schrantz, board member, says, “Life is better for patients with ALS in Northwest Arkansas partly because of the support, the encouragement, the wisdom and the personal commitment of our SCORE mentor, Bill Powell. Thank you SCORE.”
Lisa Shimmelpfenning, board member, adds, “The entire board of the Northwest Arkansas ALS Chapter thanks SCORE. Because of your help and encouragement, ALS patients in Northwest Arkansas will have a brighter future. We hope that someday the efforts we put into helping ALS patients will no longer be needed when research underway provides a cure for ALS. Until then we will serve those who need us the most. Thank you SCORE, for when we needed you the most, you were there.”
Sylvia went to Northwest Arkansas SCORE where she found encouragement, support and a wealth of knowledge of nonprofit organizations. Sylvia says, “The entire chapter deserves thanks for its willingness to help, but the mentor they assigned to help me has been so helpful. Without Bill Powell’s wisdom and in-depth knowledge, we would have floundered and failed.”
Bill helped them apply the key elements of simple SCORE business and marketing plans. In addition to these principles, he introduced the key elements of the SCORE presentation, “Nonprofit Capacity-Building Strategies.” Using these SCORE tools and example after example from his decades of nonprofit leadership, Bill helped the Northwest Arkansas ALS Partner to organize, incorporate and determine what it really wanted to be.