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Founded in 1978

Serving Kansas, Nebraska and western Missouri

Care Services Research Awareness Public Policy

2012: a year in review Offices located in • Kansas City • Omaha • Springfield • Wichita


• Consultations: Our team of nurses and master’s-level social workers will work families every step of the way. • Clinical Care: We partner with medical facilities to provide multi-disciplinary care in Kansas City, Omaha and West Plains, MO. • Equipment and Adaptation: We consult on the use and sources of equipment, home adaptations and computer-enhanced communication devices to ensure maximum mobility and independence, a loan pool of used equipment can be used if sources are not available. • Family Support: Our team members provide support to family members and caregivers. • Referrals and Resources: We link families to appropriate resources to help navigate the complex system of health, social, legal and financial services. • Newly Diagnosed: Information from our care services team and trusted outside sources customized to the needs of a person diagnosed with ALS. • Healthcare Professionals: We provide the most current resources, educational materials, as well as speakers to educate on the nature of the disease and its treatment. • Public Awareness: We are a trusted source of information on treatments and research. • Education & Outreach: We provide speakers for community groups regarding the nature of the disease and ways to get involved.

The ALS Association plays a lead role in advocating for increased public support of ALS research and public policy initiatives that responds to the needs of people with ALS. Our Chapter’s public policy efforts in Washington, D.C., have raised the profile of ALS at the White House and among members of our congressional delegation. The Association’s public policy efforts have generated more than $365 million for ALS research over the past 10 years.

In 2012 The Chapter sent a delegation of 11 to the annual National ALS Public Policy conference in Washington, D.C. Among those delegates were two veterans living with ALS and their caregivers. Meetings with all members of the Senate and House of Representatives were held with favorable results. www.alsa-midwest.org • (800) 878-2062

Global Research

The ALS Association announced it will add an additional 10 research projects to its Translational Research Advancing Therapies for ALS (TREAT ALS™) portfolio. New projects include funding two clinical management grants, three drug discovery contracts, two clinical pilot studies and three biomarker studies—all focused on finding improved treatments for people with ALS. The ALS Association’s TREAT ALS ™ portfolio presently has 80 active research projects with a total award value of $12 million. The ALS Association announced it will fund three biomarker studies, which could accelerate diagnosis of the disease and hasten clinical trials. Two of the three studies were supported by EMD/ALS Biomarker Research Fund which the Chapter was instrumental in establishing in 2009 with Ms. Cynthia Douthat in the memory of her late husband, E. Marsh Douthat III. The fund raised nearly $1 million to support biomarker research and is having a world-wide impact.

Making History. Funding Hope.

For the first time in Chapter history $1,000,000 was raised through our Walks to Defeat ALS®. These teams, people and companies have contributed or raised more than $10,000 to the success of the Walks and other Chapter events: Special K - In memory of Kurt Layton Grace Under Pressure - In memory of Max Demetz Team Treg - CVS - In honor of Treg Charlton Rich’s Rascals - In memory of Rich Vliet Mary C’s Mob - In memory of Mary Mantel Parr Power - In memory of Stephen Parr Fox Fighters - In memory of Sue Fox Captain Curt’s Commandos - In honor of Curt Mantz Lynns Cruzin Crew - In honor of Lynn Hensley Sparta Rural Hardware & J&M Foods - In honor of Jerry Fouts Golson’s Greyhounds - In memory of John Golson BV West Walks for Success - In honor of Dena Highberger Bob’s Battalion - In memory of Dr. Robert D. Conn Saved by the Bells - In memory of Howard Bell Omaha Storm Chasers - In memory of David Becker Struttin’ For Scott - In honor of Scott Cart Band for Bob Landman - In memory of Bob Landman Capitol Federal Teva Depew Gillen Rathbun & McInteer, LC Blue Cross Blue Shield of Kansas City The Mutual Fund Store Robert W. & Mary Jo Loyd Dwane L. & Velma Lunt Wallace Charitable Foundation

Special thanks to Community Health Charities of Kansas, Missouri and Nebraska for the work they do on our behalf.

In addition to the funds received through Chapter events, many generous people gave gifts and made pledges to the future of the Chapter. Here is a list of those who have donated or have a pledge of $5,000 or more in 2012: Don & Christine Alexander James & Peggy Bebb Jane Bennett Terry & Ruth Ann Betzelberger Aldis & Suzanne Birkans Brent Blume Matt & Raegan Brane Ryan & Michelle Clark Beckie & David Cooper Nancy Creasy Rob & Nancy Cross Douglas Dee & Bonnie Blythe Anonymous Robert D. & Amy Critton, Jr The Ralph L. Smith Foundation by Neil and Francis Douthat The Ralph L. Smith Foundation by The E. Marsh Douthat III Family Anonymous John & Catherine Griner Anonymous Rob & Kim Hunter Darlene & Ric Knorr Jason & Shawna Leiker Anonymous Marc & Jacqueline Lubken Warren “Butch” Michael Missouri Foundation for Health Bill Perry & Katie Rhoades Brooke Runnion & Brent Weinstein Trey & Joan Runnion David & Mary Lee Skitek Matt & LaDonna Stevens Pete & LeAne Story Tech, Inc., by Peter & Lori Inman, Judy Bjorseth, Bob & Ruth Bjorseth Anonymous David & Shirley Wurth

Fundraising

Nationwide Advocacy

Public Policy

The number of families accessing services through the Chapter continue to climb. Highlights of 2012 include: • Served 578 individuals living with ALS, their caregivers and families • Educated 183 newly diagnosed individuals on all aspects of ALS and services available through The ALS Association • Provided 4,291 consultations with ALS families in their homes, clinics, support groups, via phone or e-mail • Provided comprehensive evaluation and treatment plans for 252 patients in our multidisciplinary clinics • Facilitated 13 to 15 monthly support groups • Responded to more than 2,500 calls to the toll-free numbers • Loaned an average of 183 medical equipment items each month • Presented 245 in-service and awareness presentations to healthcare professionals, families and other interested parties with a total attendance of over 14,650.

Research

Care Services

Providing Compassionate Care and Support


Financials

Financial Strength

Numbers have not yet been audited.

2012 Board of Directors

Greg Steinberg Pete Story Steven St. John David Watkins David Wurth

Senior Staff Beckie Cooper Sally Dwyer Colleen Wachter Amy Richards Sherrie Hanneman Kansas City 6950 Squibb Rd. Ste. 210 Mission, KS. 66202 (913)648-2062

Omaha 10730 Pacific St. Ste. 103 Omaha, NE 68114 (402)991-8788

Executive Director Director of Services Director of Events Development Director Director of Communications

Springfield 2209 Petrus Cir. Ozark, MO 65721 (417)886-5003

Wichita 3450 N. Rock Rd. Ste. 211 Wichita, KS 67226 (316)612-0188

Leadership

Officers: Nancy Creasy, President Keith Gary, Vice President Greg Steinberg, Secretary Doug Dee, Treasurer Directors: Mark Allen Jason Leiker Suzie Apel Debby Malone Matt Brane Bill Perry Ryan Clark Chris Rahimian Stuart Davis Brooke Runnion Rob Hunter Ross Simpson

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2012 ALS Association Keith Worthington Chapter Annual Report