Friends of the MS Achievement Center Corporation General Information Contact Information Nonprofit Friends of the MS Achievement Center Corporation Address 3599 Rainbow Blvd, MS 3049 Kansas City, KS 66160 Phone (913) 588-8668 Fax 913 588-7428 Website www.msachievementcenter.org Facebook facebook.com//msachievementcenter/ Twitter twitter.com/ Email msac@kumc.edu At A Glance Former Names How to donate, support, and volunteer Mid-America Multiple Sclerosis Achievement Center MSAC accepts donations in the form of checks made payable to Friends of the MSAC. We accept in-kind donations for our fund raising events, including the annual Race To Nowhere and Eat Bid Laugh dinner and comedy show. The organization engages volunteers to assist in event planning and at the actual events. Long term opportunities are available for volunteers to assist in our weekly program. 1
Mission & Areas Served Statements Mission Statement The Friends of the MS Achievement Center's mission is to enhance the quality of life for people with progressed Multiple Sclerosis (MS) by supporting the MS Achievement Center at KU. We accomplish this by: Raising critical funds to ensure excellent staffing and programming of the MS Achievement Center Advocating for the needs of the MS Achievement Center and its members Engaging passionate volunteers to support the MS Achievement Center through donations and volunteer service The MS Achievement Center at KU provides a comprehensive program of physical rehabilitation, psychological support, social activities and health education for its members and their families. The program helps participants optimize their functional ability, move toward acceptance of their limitations, and take charge of their own lives. Our goal is for our individuals with MS to live to their fullest potential. Background Statement In 1994 Dr. Sharon Lynch attended a Consortium of MS Centers meeting in Minneapolis, Minnesota where they had the opportunity to tour the Fairview MS Achievement Center. She had long believed there was a need for ongoing therapy services for individuals with progressed MS. The visit to Fairview MS Achievement Center provided an example of a successful therapy program model. She returned to Kansas City and partnered with Sharon Simms, a dynamic woman living with MS who was passionate about providing options for people with MS to stay connected with others and improve their own health. Together this powerful pair of advocates gathered a team of healthcare professionals and patients living with MS to explore options for creating an MS Achievement Center in Kansas City. They found a great community partner in the Rehabilitation Institute of Kansas City who offered space and therapists for the program. As a result of their dedication and determination the Mid America MS Achievement Center (MSAC) was established in December 1995 with a goal of opening a center to provide therapeutic services for individuals with a progressive form of MS. Through this collaborative effort with the Rehabilitation Institute of Kansas City (RIKC), they opened the doors to the Mid America MS Achievement Center in August of 1997 with six participants who received services once a week. A team of dedicated professionals comprised of a neurologist, psychologist, and physical, occupational, and recreational therapists provided emotional support and specialized programming for individuals to retain their functional ability. Several expansions of the program have happened over the last 20 years. In 2013 the MSAC partnered with Kansas University Medical Center (KUMC), the National MS Society and Rehabilitation Institute of Kansas City to develop a long term plan for expanding the center capacity to 100+ participants. This group requested and was awarded a three year, $800,000 grant from the Conrad N Hilton Foundation to fund expansion. The MSAC is now operating 5 days a week as a part of the Department of Neurology at the University of Kansas Medical Center. The KU MS Achievement Center provides services to 60 individuals with progressed MS. Dr. Sharon Lynch continues as Medical Director and Chair of the Board of Directors and co-founder Sharon Simms participates in the program weekly. 2
Impact Statement In April of 2016 we successfully transitioned ownership and day-to-day operations of the Mid America MS Achievement Center to the Department of Neurology at the University of Kansas Medical Center. This was the culmination of years of work to provide the most comprehensive, member-centered wellness and rehabilitation program for people with MS in the region. This transition allows the MS Achievement Center to partner with Physical Therapy and Occupational therapy faculty to engage students in the provision of OT and PT services for members on a weekly basis. The MS Achievement Center continues to offer excellent physical and occupational therapy, emotional and cognitive support and health education in a group setting. They do this in a beautiful facility designed specifically to meet their accessibility needs. With this transition came a new name and a new mission for our organization. Friends of the MS Achievement Center exists to enhance quality of life for individuals with progressive or advanced MS. We do that through our financial and advocacy support of the MS Achievement Center at KU. The Friends of the MS Achievement Center has a 20 year history of fundraising, creating awareness and engaging volunteers in support of this cause. We will continue to build on this success while not managing the day to day operations. Our next steps and goals for 2017 include: Rebranding our organization to reflect our new role. Refining board selection criteria, increasing our board membership and clarifying policies around governance and succession. Building on our success and increasing our special event revenue to support the MS Achievement Center programs. Needs Statement As we look to maximize our support efforts our biggest needs are expanding our board, engaging event volunteers and in-kind donations for events. CEO/Executive Director/Board Chair Statement Since we opened our doors in 1997, we have taken pride in being one of less than a dozen Centers within the entire country that offer these services to those with Multiple Sclerosis. We are excited to again build on our successful past and partner with a leader in MS treatment, KU Medical Center. MS can be an incredibly debilitating and costly disease often striking during the highest earning period of life. Individuals with progressive forms of MS are forced to leave careers and survive on monthly disability payments. Currently, insurance does not cover maintenance therapy for MS. The cost of seeking private therapy services puts it out of the reach of many individuals with progressive MS. By providing ongoing therapy at a low monthly membership rate, we are helping to mitigate some of the impact MS has on families in our community. The board of the Friends of the MS Achievement Center is excited at this opportunity to reach more individuals with progressed MS and embraces their changing mission to support the growing MSAC. It is an exciting time as we continue to expand our services to more individuals impacted by MS. Service Categories Single Organization Support Rehabilitative Care Areas of Service Areas Served 3
Areas MO KS MO - Jackson County MO - Clay County MO - Platte County KS - Wyandotte County KS - Johnson County KS - Leavenworth County 4
Programs Programs Financial support for the weekly MS Achievement Center program Description This program of the Friends of the MS Achievement Center provides 45% of funding needed to operate the KU MS Achievement Center. To support this program we organize and host two annual fundraising events; Race to Nowhere stationary bike race, and Eat Bid Laugh dinner comedy show and silent auction. The proceeds of these events allow the Achievement Center to provide their medically-monitored, evidence-based wellness program to individuals with progressive multiple sclerosis. Category Diseases, Disorders & Medical Disciplines, General/Other Multiple Sclerosis Population Served Adults,, Short-Term Success Long- Term Success Program Success Monitored By The immediate success of this program will be evidenced with meeting our goal for support of the program for budget year 2017. This will allow the program to be provided uninterrupted. The long-term success of this program will mean that individuals with progressive MS have access to a medically-monitored, evidence-based wellness program that addresses physical, cognitive and emotional health. Underwriting the cost of providing this program is critical due to the high cost of providing such intensive services. The services are provided in a group setting and not billable to insurance; members pay a monthly fee to participate. Success monitoring will be based on dollars raised through two special events. Budgeted revenue for the two events: Race to Nowhere - $64,956 Eat Bid Laugh $56,650 Examples of Program Success The 19 th Annual Race to Nowhere was held February 25 th at Kirmayer Fitness Center on the KUMC campus. Over 150 riders participated and a record number were members of the MS Achievement Center. These riders and other members together raised $37,000 for the cause. Combined with successful sponsorships and tight monitoring of expenses this contributed to the most successful event in 19 years. The net proceeds of this event were $86,177.89! Well above our goal of $64,956. 5
Scholarship fund for MS Achievement Center members in need of financial support Description Category Raise money to build the scholarship annual funds to support the individuals who cannot afford the monthly membership fee. Diseases, Disorders & Medical Disciplines, General/Other Multiple Sclerosis Population Served Adults,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success Short term success would be raising the $3000 required to match anticipated needs for 2017. Thus allowing those individuals to participate in the program this year. Long term success of this program will make it possible for anyone with the desire and qualifications to participate in the MS Achievement Center to do so regardless of financial ability. One of the significant hurdles for individuals with MS is the high cost of living with the disease. The average annual cost of living with MS exceeds $70,000. Most individuals are diagnosed during their prime income earning years, often significantly reducing ability to work and long-term financial stability. Offering scholarships to participate in the program removes one small barrier to achieving their highest quality of life. Fund for scholarships are raised at the annual Eat Bid Laugh event in the fall. 2017 will be the 3 rd year fundraising for scholarships. In our first two years of asks we have raised a combined $8,000. 6
Community Engagement with the MS Achievement Center Description Serve as community advocates, educating and creating awareness about the services available from the MS Achievement Center. Recruit volunteers to support the MS Achievement Center program and fundraising events of the Friends of the MSAC. Category Diseases, Disorders & Medical Disciplines, General/Other Multiple Sclerosis Population Served Adults,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success In the short-term success is evidenced by adequate volunteers for the program and fundraising events. Long term success will be evidenced by a broad base of community support for the work done by the MS Achievement Center. Creating awareness of the critical need by shedding light on the specific challenges of dealing with this chronic disease is a key strategy. Educating the public and grant funders about the myriad ways MS impacts individuals and the few options available to address these needs will lead to success. Constant review of volunteer engagement with the program as well as awareness of our services among health care professionals. Since moving to KU the Achievement Center has greatly increased the breadth of recruitment. When the program began and through 2013 most of the members of the MSAC were patients of one neurologist. A significant reason was the very limited number of openings in the program; there was often a very long wait list. Today we have members who are patients at 8 different neurology practices in the Kansas City area. CEO Comments With the successful transition of program ownership and day-to-day operations to the Department of Neurology at the University of Kansas Medical Center came changes to our program as well. The ultimate goal remains the same - enhancing quality of life for individuals with progressive MS. Our role in accomplishing that goal has move from direct control to fundraising and advocacy. The MS Achievement Center continues to offer excellent physical and occupational therapy, emotional and cognitive support and health education in a group setting. They do this in a beautiful facility designed specifically to meet their accessibility needs. The Friends of the MS Achievement Center will continue to raise critical funds to support their work and enhance quality of life for their members. The Friends of the MS Achievement Center has a 20 year history of fundraising, creating awareness and engaging volunteers in support of this cause. We will continue to build on this success while not having responsibility for day-to-day operations. 7
Leadership & Staff Executive Director/CEO Executive Director Ms. Judy Markwardt-Oberheu Term Start Jan 2014 Email jmarkwardt-oberheu@kumc.edu Staff Paid Full-Time Staff 0 Paid Part- Time Staff 0 Volunteers 100 Retention Rate 0% Paid Contractors 0 Plans & Policies Organization Has a Fundraising Plan Organization Has a Strategic Plan Management Succession Plan Organization Policy and Procedures Nondiscrimination Policy Whistleblower Policy Document Destruction Policy Yes Under Development No Yes No No Yes Collaborations The MSAC has a long history of collaborating with other healthcare facilities and organizations working to support individuals with MS. Turning Point partners with us to provide short term group education programs from tai-chi to resiliency. National MS Society partners to promote our programs. Government Licenses Is your organization licensed by the government? No 8
Board & Governance Board Chair Board Chair Dr. Sharon Lynch Company Affiliation KU Medical Center Term Nov 2015 to Nov 2018 Email slynch@kumc.edu Board Members Name Ms. Sara Baker Mr. Gary Dickerson Mr. Phil Hodes Mrs. Anne Hussar Mr. John Janchar Dr. Leon LeBuffe Ms. Shannon Lepper Dr. Sharon Lynch Mr Nick Main Ms. Deanna Markley Ms. Judy Markwardt-Oberheu Ms Stephanie Navrat Ms. Jenny Weatherford Affiliation Rehabilitation Institute of Kansas City Retired Black and Veatch Retired Black and Veatch Retired Rehabilitation Institute of Kansas City KU Medical Center Community Volunteer Mid America Rehabilitation Hospital University of Kansas Medical Center Community Volunteer Community Volunteer Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 11 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 5 Female 8 Unspecified 0 Governance Board Term Lengths 3 9
Board Term Limits 0 Board Meeting Attendance % 80% Written Board Selection Criteria? Written Conflict of Interest Policy? Yes Under Development Percentage Making Monetary Contributions 100% Percentage Making In-Kind Contributions 62% Constituency Includes Client Representation Yes Number of Full Board Meetings Annually 10 Standing Committees Finance Development / Fund Development / Fund Raising / Grant Writing / Major Gifts Board Governance Program / Program Planning CEO Comments The four-member Governance Committee is engaged in a review process to look at current bylaws, standing rules and board structure. They will present a proposal to the full board outlining recommended bylaw changes, board structure and selection criteria. Once this process is complete and approved the committee will focus on the task of recruiting a more diverse board with very specific expertise. They final step once this board is in place will be to develop a strategic plan for the organization. 10
Financials Fiscal Year Fiscal Year Start Jan 01, 2017 Fiscal Year End Dec 31, 2017 Projected Revenue $138,650.00 Projected Expenses $138,563.89 Endowment Value $0.00 Percentage 0% Detailed Financials Revenue and Expenses Total Revenue $145,274 $136,241 $84,181 Total Expenses $146,066 $131,934 $91,369 Revenue Sources Foundation and Corporation $125,211 $118,331 $67,956 Contributions Government Contributions $0 $0 $0 Federal $0 $0 $0 State $0 $0 $0 Local $0 $0 $0 Unspecified $0 $0 $0 Individual Contributions $0 $0 $0 Indirect Public Support $0 $0 $0 Earned Revenue $26,495 $27,840 $23,000 Investment Income, Net of Losses $0 $0 $0 Membership Dues $0 $0 $0 Special Events ($6,432) ($9,930) ($6,775) Revenue In-Kind $0 $0 $0 Other $0 $0 $0 11
Expense Allocation Program Expense $143,000 $125,000 $90,755 Administration Expense $3,066 $6,934 $614 Fundraising Expense $0 $0 $0 Payments to Affiliates $0 $0 $0 Total Revenue/Total Expenses 0.99 1.03 0.92 Program Expense/Total Expenses 98% 95% 99% Fundraising Expense/Contributed Revenue 0% 0% 0% Assets and Liabilities Total Assets $8,224 $9,015 $4,709 Current Assets $8,224 $9,015 $4,709 Long-Term Liabilities $0 $0 $0 Current Liabilities $0 $0 $0 Total Net Assets $8,224 $9,015 $4,709 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 Capital Campaign Anticipated in Next 5 Years? No Organization Comments In lieu of an audit, we have a team of two board members review all transactions and records maintained by the Treasure on an annual basis. This report is then shared with the full board. Foundation Comments FY 2015, 2014, 2013: Financial data reported using IRS Form 990. Foundation/corporate revenue line item includes contributions from individuals. Created 06.08.2018. Copyright 2018 Greater Kansas City Community Foundation 12