Front Cover

Create A World Without ALS

2013 Annual Report

Serving Kansas, Nebraska and western Missouri

Kansas City 6950 Squibb Rd. Ste. 210 Mission, KS 66202 (913)648-2062

Omaha10730 Pacific St.Ste. 103Omaha, NE 68114(402)991-8788

Springfield 2209 Petrus Cir.Ozark, MO 65721

(417)886-5003

Wichita3450 N. Rock Rd.Ste. 211Wichita, KS 67226(316)612-0188

Financial Information

Financial information is not yet audited

2013 Board of DirectorsOfficers:

Nancy Creasy, President Keith Gary, Vice PresidentGreg Steinberg, Secretary

Mark Allen, TreasurerDirectors:

Suzie ApelMatt Brane Ryan ClarkDoug Dee Ray Evans Rob Hunter

Walter Johnson Jason LeikerJim Miller Bill Perry Chris Rahimian Angie ReadBrooke Runnion

Ross SimpsonSteven St. John Greg Steinberg Pete Story David Watkins David Wurth

Senior Staff Beckie Cooper Executive Director Sally Dwyer Program Director Colleen Wachter Director of Events Amy Richards Development Director Sherrie Hanneman Director of Communications

Programs$1,221,723

66%

Research Program$237,017

13%

Fundraising$160,146

8%

Administration$237,017

13%

ExpensesGifts from Individuals$686,882

36%

Event Revenues$1,201,304

64%

Income

www.alsa-midwest.org

Proud members of Community Health Charities of Kansas, Missouri and Nebraska.

Celebrating Courage and Commitment

The Chapter sent representatives from all three states to the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. Thirteen representatives from The Chapter, including volunteers, clients and staff, spent two days in educational seminars and training sessions, culminating with visits to the offices of all 17 members of congress.

In 2013 these advocacy efforts paid dividends. Thanks to our outreach, the legislation to fund The Association’s two top public policy priorities was passed. First, $6 million to continue funding for the National ALS Registry. Second, a nearly 20-percent increase in funding for the ALS Research Program (ALSRP) at the Department of Defense. The program will receive $7.5 million this year, bringing total funding for the ALSRP to $40 million, all of which is explicitly focused on finding treatments for ALS.

The ALS Association has committed more than $67 million to find effective treatments and a cure for Lou Gehrig’s Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

In 2013 the Chapter’s Board of Directors approved a $50,000 research investment directed to The EMD/ALS Biomarker Research Fund. This fund has already affected the efforts of three biomarker research projects. Identifying appropriate biomarkers will significantly impact earlier diagnosis and speed up clinical trials.

www.alsa-midwest.org

• Anonymous • Don & Christine Alexander • Anonymous • Jane Bennett • Ruth Ann & Terry Betzelberger • Anonymous • Brent Blume • Matt & Raegan Brane • Anonymous • Jack and Candy Clevenger • Beckie & David Cooper • Rogene Conn • Ryan & Michelle Clark • Nancy M. Creasy • Rob & Nancy Cross • Douglas Dee & Bonnie Blythe • The Ralph L Smith Foundation by the E. Marsh Douthat III Family • David and Tammy Doyel • Susan & Keith Gary • Dorothy Gehringer • Mary Gunter

• Robert & Kim Hunter • Estel Jones • Ric & Darlene Knorr • Jason & Shawna Leiker • Mary Jo & Robert W. Loyd • Marc Lubken • Butch Michael • Jim & Linda Miller • Missouri Foundation for Health • Oppenstein Brothers Foundation • Irene Reece • Bill Perry & Katie Rhoades • Brooke Runnion & Brent Weinstein • Trey & Joan Runnion • Scheel’s All Sport• John Simon • David & Mary Lee Skitek • Pete & LeAne Story • Tech, Inc., (Lori and Peter Inman, Judy Bjorseth, Ruth and Bob Bjorseth) • David & Shirley Wurth

Funds: Starting at $25,000 these funds were created to support Chapter Services and provide a lasting legacy.

Gifts and pledges: Many generous people gave gifts and made pledges to the future of the Chapter. Here is the list of those who have donated or have a pledge of $5,000 or more in 2013:

• The EMD/ALS Biomarker Research Fund • The Bruce Edwards, ALS Promise Fund, Bruce’s Battalion FIGHTING ALS • Dr. Robert (Bob) Conn Fund for Compassionate Care Services • Jeanne Frances Henckel Critton Family Fund • Haley’s Hope • The Beckie Cooper Fund for Research • The Charlie Betzelberger Promise Fund • Karen E. Michael Fund for a Future Free of ALS

www.alsa-midwest.org

In 2012 The Chapter implemented an enhanced service delivery model. Designed to utilize a specialized approach among Care Services staff, the model also provides the ability

for the Chapter to continue to serve a larger population.After two full years of implementation, the new model appears to be functioning as intended. Without additional staffing, the breadth of programming has expanded.

• A new Affiliated Treatment Center has been opened in West Plains, Mo.

• Outreach to the primary care physicians of new clients has increased, including providing an informational packet to the doctor at no cost.

• Kits are provided for the newly diagnosed person. The ADL kit for upper extremity onset, AAC for bulbar onset. These are provided at no cost.

• An educational program for schools of nursing has been developed and is being taught throughout the service area.

• A more complete resource database, including the new client packet, is now available.

Core values of The ALS Association: • People with ALS and their families come first in everything we do • Scientific credibility and innovation are the hallmarks of our research program

• Diversity of ideas, cultures, ethnicities and backgrounds strengthen our efforts • Commitment to excellence and professionalism are key tenets at all levels of our organization • Collaboration and partnership within our organization and with others who share our vision and values are key to sustained success in the fight against ALS•

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• Financial strength enables us to accomplish our goals • Integrity, honesty and ethical behavior guide all our endeavors

Events: In 2013 The Chapter raised more than $1.3 million through its Walks, the Joe McGuff ALS Golf Classic and annual A Night of Hope. The growth of The Walk to Defeat ALS throughout the service area continues to fund vital services to families living in Kansas, Nebraska and western Missouri. These teams, people and companies have contributed or raised more than $10,000 to the success of the Walks and other Chapter events:

Beckie Cooper Retires Over the past 26 years

this work has exposed me to every emotion I can imagine, and thus allowed me to lead a very

fulfilling life.I have been……rewarded to have worked for such a worthy cause;…honored to have worked with such selfless donors, volunteers, individuals and families who experience ALS, and phenomenal local and national staff members;…humbled by the bravery, grace and determination of those who personally face this disease;…saddened by the loss of so many wonderful people;…challenged by growing needs and tight economies;…proud of what we have allaccomplished working together;…frustrated that, to spite all efforts, we are still searching for a cause and cure;…encouraged by the new pace of research and discovery; and above all,…confident that we will take the upper hand in this battle!I take with me memories I will cherish for a lifetime — many touching, some funny, some scary, some embarrassing, some prideful. Thank you for each of them.I have every confidence that, with your ongoing support and the new leadership, The Chapter will continue to prosper for the benefit of those with ALS!And so dear friends, I thank you for a wonderful 26 years, and welcome you to a new and exciting era!

With heartfelt thanks andappreciation,

• ALS AMBASSADORS • Band for Bob Landman • Blue Cross Blue Shield Kansas City• Bob Loyd • Bob’s Battalion • Buren-yer-Heide Gang • Captain Curt’s Commandos • Fox Fighters • Golson’s Greyhounds • Grace Under Pressure • Howland’s Heroes

• Lynns Cruzin Crew • Phi Delta Theta (Wichita) • PULSE - team Hilbert • Saved by the Bells • Special K • Team EvaNiceDay • Team Treg - CVS • TEVA • The Cocheral Family Foundation