ALS Association Mid-America Chapter

Transcription

1 ALS Association Mid-America Chapter General Information Contact Information Nonprofit ALS Association Mid-America Chapter Address 6950 Squibb Road, Suite 210 Mission, KS Phone (913) Fax Website Facebook facebook.com/ Twitter twitter.com/ At A Glance Former Names ALS Association - Keith Worthington Chapter 1

2 Mission & Areas Served Statements Mission Statement To lead the fight to cure and treat ALS through global research and advocacy, and to empower people affected with Lou Gehrig s Disease to live fuller lives by providing compassionate care and support. Background Statement What started in the living room of Keith and Sue Worthington in Kansas City, Mo. because there was little information about ALS at the time, has turned into one of the strongest and well-respected Chapters of The ALS Association in the country. The Mid-America Chapter funds research specific to finding the cause and cure and therapies for ALS while providing care services to help those living with ALS to better manage their disease and maintain their independence to the greatest degree possible. The Chapter has been able to bring services closer to those with ALS by expanding from one office in Kansas City to offices in Wichita, Kan., Omaha, Neb., and Springfield, Mo. A critical component to the Chapter's care services resides in the accessibility of a multidiscipline clinic where a person with ALS can go to see multi-specialty doctors to provide clinical care. The Chapter currently supports two ALS Certified Centers of Excellence in Kansas City, Mo. at the University of Kansas Medical Center and in Omaha, Neb. at the University of Nebraska Medical Center. An ALS Clinic is available at Ozark Medical Center to service southern Missouri, southeast Kansas and northern Arkansas, and a new clinic is starting at the University of Missouri-Columbia. Impact Statement We educate people with ALS and their caregivers about the many options available to help manage the disease and about advances in research through in-home visits, printed material, Web site, support groups and symposiums. We serve as a resource for any and all health care providers about how best to meet the needs of those with ALS. We help those with ALS identify their ever-changing needs for durable medical equipment and then help them secure equipment from the best sources possible. As a stop gap, we maintain an equipment loan pool. The ALS Association Center of Excellence is a partnership between the Chapter and The University of Kansas Medical Center that provides a weekly multi-disciplinary clinic. Assuring that government at all levels appreciates the needs of those dealing with ALS is also a major focus. And, of course, we are always raising funds for research. We are serving more than 500 families a year, making more than 4,100 personal contacts with patients through home visits, phone calls or s. In the last few years an average of 115 people per year newly diagnosed with ALS have reached out to us. We hold 15 monthly support groups throughout the service area. We also partner with KU Medical Center to provide comprehensive evaluations and treatment plans for patients through our clinic. For those unable to make the trip, the clinic utilized telemedicine appointments. All of our services are offered at no cost to the patients or their families. Needs Statement Our primary need is having the ability to continue the valuable programs we offer to those affected by ALS. Though the incidence of ALS is not increasing, the numbers of those with ALS turning to the Chapter for support grows annually. We also fund research to find meaningful therapies to treat ALS while leaving no stone unturned in the search for a cure. 2

3 CEO/Executive Director/Board Chair Statement The Mid-America Chapter of The ALS Association was established before the national organization, and is one of the largest chapters within The Association. Our chapter is known for innovation and establishing best practices among the network of chapters. Responding to the challenge of increased numbers of individuals and their families affected by ALS in our service area of Kansas, Nebraska and western Missouri, the Chapter instituted a new centralized care services model in Simultaneously, we created a set of outcomes metrics to demonstrate the effectiveness of client care services. As a result, the Chapter continues to provide highquality services while meeting the increased demand. Complimenting care services provided by the Chapter, we partner with the University of Kansas Medical Center (Kansas City) and Nebraska Medicine (Omaha) to provide certified, multidisciplinary ALS treatment centers to care for our clients living with ALS. We continue to expand the availability of our clinics with expanding partnerships with Cox Health (Springfield, Mo.), Ozark Medical Center (West Plains, Mo.), Neurological Consultants of Kansas (Wichita, Kan.) and the University of Missouri (Columbia). While the Chapter s fundraising activities support care services and clinics, a significant portion of funds support ALS research through the national offices of The ALS Association. The Association has committed more than $99 million to find effective treatments and a cure for ALS. Its 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. Trained as a neuroscientist, I was directly involved in research related to neuropsychiatric and neurodegenerative disorders. As most of these disorders have no cure, organizations such as The ALS Association are critically important to people with ALS and their families. While my research credentials were a likely reason for being invited to join the Mid-America Chapter Board of Directors, I have developed a deep passion for the Chapter s mission and dedication to serving individuals and families affected by ALS. Service Categories Nerve Muscle & Bone Diseases Specifically Named Diseases Nerve Muscle & Bone Diseases Research Areas of Service Areas Served Areas MO KS NE 3

4 Programs Programs Case Management and Consultation Description Provide personal contact to discern needs and coordinate services for people with ALS and their families. Provide information and services to empower clients to make informed decisions in managing living with ALS. Category Diseases, Disorders & Medical Disciplines, General/Other Amyotrophic Lateral Sclerosis Population Served Other Named Groups,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success Increased information and utilization of available resources. Those with ALS will experience the greatest quality of life possible. We use evaluations of this service and track utilization of it. Our evaluations and communication with those with ALS and their families and survivors indicate that those using this service are better able to manage living with the disease, anticipating and planning for the inevitable changes and avoiding crisis. Education and Awareness Description Category Provide information through newsletters, support groups and a web site to educate people with ALS & their caregivers about the many options available to help manage the disease & about the advances in research. Conduct in-service training for health providers & presentations for lay audiences. Diseases, Disorders & Medical Disciplines Amyotrophic Lateral Sclerosis Population Served General Public/Unspecified,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success Increased presentations to lay and professional groups. Greater public awareness of the disease and the organization. Greater awareness of the disease and its management among medical professionals and health care providers. We track the number of presentations and the size of the audiences monthly. Success of this program results in better care for those with ALS from home health agencies, hospices, hospitals, nursing homes, etc. 4

5 Clinical Care Description Category Multi-disciplinary teams meet weekly at the University of Kansas Medical Center and Nebraska Medicine and monthly at Ozark Medical Center and the University of Missouri-Columbia Medical Center to plan the treatment and care of people with ALS. The Certified Centers at KU and Nebraska Medicine conduct ALS Research through drug and clinical trials. Diseases, Disorders & Medical Disciplines, General/Other Amyotrophic Lateral Sclerosis Population Served Other Named Groups,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success Those with ALS will better manage the progression of their disease. Those with ALS will live longer and more productive lives. The clinic program is evaluated regularly through a re-certification process. The program has been successfully re-certified. The numbers of those utilizing the clinic have increased annually. Evaluations indicate a high level of satisfaction. CEO Comments Our most valued service is the ability to provide at home consultation and case management by our professional service coordinators. Given the rural nature of much of our service area, it is a challenge to consistently provide this service. We are seeking support from communities throughout the service area to maintain the frequency and quality of these visits. 5

6 Leadership & Staff Executive Director/CEO Executive Director Term Start Jan Ms. Beckie Cooper Experience In 1971, after a short teaching career, Beckie began working as both a volunteer and staff member for volunteer and professional associations at the local, regional and national level. In 1988 Beckie established a management firm designed specifically to provide resource sharing opportunities to nonprofit organizations. The ALS Association Keith Worthington Chapter was one of her first clients. For thirteen years the management firm provided all of the staffing needs of the organization. In 2001 Beckie dissolved the firm and she and her staff became employees of the Chapter. Beckie's experience as both a non-profit Director and staff person have provided her insight that has helped grow the chapter into a thriving and mature organization. Senior Staff Ms. Sally Dwyer Title Experience/Biography Program Director Sally Dwyer, Program Director, is in her 18th year with the ALS Association Keith Worthington Chapter. She holds both a Masters and Bachelors degree in Education. In addition to teaching, Sally s past job experience includes being Vice President and Business Manager with a computer educational publishing company. As the Director of Programs, Sally oversees the Chapter s patient services, education, awareness and advocacy in Kansas, Nebraska and the western two-thirds of Missouri. Staff Paid Full-Time Staff 17 Paid Part- Time Staff 0 Volunteers 150 Retention Rate 81% Formal Evaluations CEO Formal Evaluation CEO/Executive Formal Evaluation Frequency Senior Management Formal Evaluation Senior Management Formal Evaluation Frequency NonManagement Formal Evaluation Non Management Formal Evaluation Frequency Annually Annually Annually Plans & Policies 6

7 Organization Has a Fundraising Plan Organization Has a Strategic Plan Management Succession Plan Organization Policy and Procedures Nondiscrimination Policy Whistleblower Policy Document Destruction Policy No No Collaborations Midwest Neurological Coalition Mission: To advance collaboration of neurologically focused organizations and the healthcare community. Vision: A vibrant coalition creating awareness and providing resources in the communities we serve. Institute for Neurological Discoveries - Transforming discoveries into cures for neurological disorders. An initiative aimed at advancing existing programs and identifying new areas for development. Affiliations Affiliation Affiliate/Chapter of National Organization (i.e. Girl Scouts of the USA, American Red Cross, etc.) - Affiliate/chapter Year 1988 Government Licenses Is your organization licensed by the government? No CEO Comments In an effort to move services closer to those with ALS, the Chapter has established offices in Wichita, Omaha and Springfield. The Chapter is also trying to raise funds in these areas. 7

8 Board & Governance Board Chair Board Chair Mr. Keith Gary Company Affiliation Kansas City Area Life Sciences Institute Term Feb 2015 to Jan 2017 Board Members Name Mr. Mark Allen Mrs. Suzanne Apel Mr. Matt Brane Mr. Ryan Clark Ms. Nancy Creasy Mr. Jay Daugherty Mr. Keith Gary Mr Robert Hunter Mr Jason Leiker Mr Bill Perry Mr. Chris Rahimian Mrs Brooke Runnion Mr. Greg Steinberg Mr. Pete Story Mr. Chris Tonniges Mr. Dave Watkins Mr. David Wurth Affiliation Case Advances LLC Malone Finkle Eckhardt & Collins Bushwood Investments LLC Blue Cross Blue Shield of Kansas City Daugherty Mediation Kansas City Area Life Sciences Institute Stinson Morrison Hecker Foland, Wickens, Eisfelder, Roper & Hofer Legacy Title Scout Lockton Companies Husch Blackwell LLC CMI Slagle Bernard & Gorman Community Volunteer Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 17 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 14 Female 3 Unspecified 0 8

9 Governance Board Term Lengths 2 Board Term Limits 2 Board Meeting Attendance % 56% Written Board Selection Criteria? Written Conflict of Interest Policy? Percentage Making Monetary Contributions 100% Percentage Making In-Kind Contributions 25% Constituency Includes Client Representation Number of Full Board Meetings Annually 10 Standing Committees Board Development / Board Orientation Board Governance Development / Fund Development / Fund Raising / Grant Writing / Major Gifts Education Executive Finance Human Resources / Personnel Investment Legislative Nominating Operations Program / Program Planning Special Events (Golf Tournament, Walk / Run, Silent Auction, Dinner / Gala) CEO Comments In an effort to move services closer to those with ALS, the Chapter has established offices in Wichita, Omaha and Springfield. The Chapter is also trying to raise funds in these areas. 9

10 Financials Fiscal Year Fiscal Year Start Feb 01, 2015 Fiscal Year End Jan 31, 2016 Projected Revenue $1,781, Projected Expenses $1,781, Endowment Value $0.00 Spending Policy N/A Percentage 0% Detailed Financials Revenue and Expenses Total Revenue $1,825,287 $1,965,399 $1,843,937 Total Expenses $1,840,415 $1,823,341 $1,944,298 Revenue Sources Foundation and Corporation $597,909 $759,386 $814,020 Contributions Government Contributions $0 $0 $0 Federal State Local Unspecified $0 $0 $0 Individual Contributions Indirect Public Support $9,045 $0 $6,700 Earned Revenue $0 $0 $0 Investment Income, Net of Losses $35,417 $26,796 $1,429 Membership Dues $0 $0 $0 Special Events $1,182,752 $1,184,563 $1,020,592 Revenue In-Kind $0 $0 $0 Other $164 ($5,346) $1,196 10

11 Expense Allocation Program Expense $1,477,962 $1,476,532 $1,610,555 Administration Expense $171,239 $161,636 $149,572 Fundraising Expense $191,214 $185,173 $184,171 Payments to Affiliates Total Revenue/Total Expenses Program Expense/Total Expenses 80% 81% 83% Fundraising Expense/Contributed Revenue 11% 10% 10% Assets and Liabilities Total Assets $748,515 $778,783 $600,283 Current Assets $409,251 $469,927 $299,034 Long-Term Liabilities $0 $0 $0 Current Liabilities $237,055 $252,195 $215,753 Total Net Assets $511,460 $526,588 $384,530 Short Term Solvency Current Ratio: Current Assets/Current Liabilities Long Term Solvency Long-Term Liabilities/Total Assets 0% 0% 0% Top Funding Sources Top Funding Source & Dollar Amount Second Highest Funding Source & Dollar Amount Third Highest Funding Source & Dollar Amount Capital Campaign Currently in a Capital Campaign? No Goal $0.00 Amount Raised to Date 0 as of 0 Capital Campaign Anticipated in Next 5 Years? No Organization Comments Reserves of approximately $330,000 are invested through the Greater Kansas City Community Foundation and Affiliated Trusts. Consequently they are not shown on the Chapter balance sheet. Foundation Comments FYE 1/31/2014, 2013, 2012: Financial data reported using IRS Form 990. Created Copyright 2017 Greater Kansas City Community Foundation 11