Muscular Dystrophy Association

Transcription

1 Muscular Dystrophy Association SUMMARY Mission The Muscular Dystrophy Association is a voluntary health agency, a dedicated partnership between scientists and concerned citizens aimed at conquering more than 40 neuromuscular diseases that affect more than a million American adults and children. The diseases in MDA's program include nine forms of muscular dystrophy, amyotrophic lateral sclerosis (Lou Gehrig's disease), spinal muscular atrophy, Charcot-Marie-Tooth disease, metabolic diseases of muscle, myasthenia gravis, inflammatory myopathies, and other neuromuscular conditions. MDA combats these diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education. The association's programs are funded almost entirely by individual private contributors. Contact Information Primary Address 6315 Presidential Court, Ste 140 Fort Myers, FL Alternate Address 6315 Presidential Court, Ste 140 Fort Myers FL Phone office@mdausa.org Website Facebook mdasouthwestflorida General Information nprofit Tax Exempt Status Muscular Dystrophy Association Public Supported Charity 1

2 Incorporation Year 1950 State Charitable Solicitations Permit Sept 2017 State Registration Dec

3 BACKGROUND & NEEDS Impact Statement The MDA is making great strides in the care and treatment of individuals with neuromuscular conditions. This year the FDA has approved new drugs and therapies with promising outcomes. Our clinic has had the opportunity to expand and continues to grow as we strive to provide cutting edge care. As a result of our amazing research team, several of our clinical trials have reached the human testing phase. At the MDA we are commited to caring for and curing the individuals we serve. Needs Statement Clinic visits at no cost to the patient. $300 per appointment, 545 registered family members in need. Genetic testing vital to our family members for inclusion in clinical trials, $900-$2,000 per test, 545 registered members in need. Summer Camp for registered children ages 6-17, no cost to families. MDA cost $2,000 per child, 53 camp age children in need. Wheelchair and durable medical equipment repair and support, MDA cost $500 per year per family member, 545 family members in need. Background Statement MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. In 2014, MDA celebrated 60 years as being the leader in research and services to people with a neuromuscular disease MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and support services, and far-reaching professional and public health education. With national headquarters in Chicago, MDA has more than 200 offices across the country, sponsors some 200 hospital-affiliated clinics and supports more than 330 research projects around the world. MDA supports more research on neuromuscular diseases than any other private-sector organization in the world. MDA scientists are in the forefront of gene therapy research and have uncovered the genetic defects responsible for several forms of muscular dystrophy, Charcot-Marie-Tooth disease, a form of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), childhood spinal muscular atrophy and several other neuromuscular conditions. The Association's comprehensive services program includes diagnostic and follow-up medical consultations, flu shots, support groups, MDA summer camps for youngsters, a medical equipment program, assistance with equipment repairs and resource referral. Through its national advocacy program, MDA works to make life better for people with muscular dystrophy and related muscle diseases by providing representation in matters of public policy and research advancement, nationally and internationally; and facilitating active involvement in these areas by the people it serves. MDA was created in 1950 by a group of adults with muscular dystrophy, parents of children with muscular dystrophy and a physician-scientist studying the disorder. Statement from the Board Chair Statement from the CEO/Executive Director Areas Served 3

4 FL- Charlotte FL- DeSoto FL- Hardee FL- Lee FL- Manatee FL- Sarasota FL- Hardee Health Care Services in the SWFL District Office of the the MDA covers 10 counties, including Charlotte, Collier, Desoto, Glades, Hendry, Highlands, Hardee, Lee, Manatee and Sarasota Counties. Service Categories Primary Organization Type Secondary Organization Type Tertiary Organization Type Medical Research Health Care Human Services 4

5 PROGRAMS MDA Clinic Description We provide cutting edge medical care to our registered families at no cost twice monthly through Sarasota Memorial Hospital and the efforts of our Clinic Director, Dr. Gregory Hanes. Budget $96, As part of our strategic plan we are moving toward a multidisciplinary approach to clinical care by offering experts in neurology, pulmonology, physical and occupational therapy, speech therapy, pediatric neurology, nutrition and cardiology to best meet all of the complex healthcare needs of those with Muscular Dystrophy. Category Program Linked to Organizational Strategy Population Served Short Term Success Long Term Success Program Success Monitoring Program Success Examples Health Care, General/Other Other Health/Disability Short term measurement of success would be the continuing growth of the clinic due to the excellent care received by our family members. The long term measurement of success for this program would ideally be the care and curing of the 43 neuromuscular diseases we cover. Our clinic program is monitored monthly by use of both our clinic recap report and our clinic services summary. We work closely with the clinic director and clinic staff to monitor clinic activity and flow and make necessary adjustments. The biggest measurement of the success of our clinic programs is without question our family members. Proactivity is the most vital component in the care of individuals with neuromuscular diseases. Due to the excellent care and proactive treatments and therapies provided at the clinic we have several family members that have been diagnosed with ALS over 10 years ago as well as family members with Duchennes, which is normally fatal by late teens, that are now over the age of 25. 5

6 MDA Summer Camp Description Each year MDA provides a barrier-free camp experience where a child with a neuromuscular disease can "just be a kid" among friends and children with the same disease. Through our fundraising efforts and generous donor contributions, these youngsters attend camp at no cost to their families. Budget $32, At camp these children are given an opportunity to take part in lots of activities that they may not normally have access to like swimming, canoeing, horseback riding, adaptive sports and arts and crafts. The MDA provides a one on one camper counselor experience to not only tend to all of the campers needs, but to ensure that all campers are comfortable and included. All of the activities at camp are tailored to each campers ability level to foster success and self esteem. Category Program Linked to Organizational Strategy Population Served Short Term Success Long Term Success Program Success Monitoring Program Success Examples Youth Development, General/Other Youth Leadership Children and Youth (0-19 years) Provide every child that attends an amazing experience that fosters hope, friendship and self confidence. The long term success of this program can be measured by the confident, self assured individuals that graduate from our camp program. The benefit that this program provides is priceless in helping our local children develop self-esteem, lasting friendships, and a better awareness that their disease does not define them. Our summer camp program is monitored on a national level for success and compliance. We perform post-camp evaluations of the camp program, MDA staff, volunteer counselors and campers to look for areas of improvement. Three easy ways to measure success of the program are: % of Return campers year over year- 80% % of return volunteer counselers year over year- 75% # of camp incidents reported-0 Additionally, every camp session provides us with heart warming stories of success. One example, a very introverted boy with one of the more severe neuromuscular diseases, Duchennes, came to our camp. He hardly spoke two words upon arrival. He was matched with an excellent volunteer counselor that worked very hard to gain his trust and bring him out of his shell. By the end of the week he was having a great time and enjoying all the activities. When his parents came to pick him up they were greeted by a smiling boy who couldn't say enough about his experience at camp. His parents were astonished by the transformation and said they will be sending him again next year. 6

7 MANAGEMENT CEO/Executive Director CEO/Executive Director Mr. Steven Derks CEO Term Start Sept 2012 CEO Experience He joined the American Cancer Society in 2002, and founded the organization s CEOs Against Cancer public education and fundraising program. The program today includes nearly 100 CEOs in Illinois, empowering 5 million employees and dependents with lifesaving prevention, early detection and cancer information. It also has grown to 400 CEOs nationwide in 14 chapters. Prior to his work there, Derks was vice president of Advocate Health Care in Oak Brook, Ill., a $3 billion health care delivery network with 10 hospitals and 200 sites of care, serving more than 2 million people per year. There he was responsible for federal, state and local government relations, metropolitan community relations, facilities planning, community benefit strategy and spending. Earlier in his career he was a senior director of the Illinois Hospital Association. Derks has been active in many community organizations including Horizons for Youth and the Respite Board of Directors. He was appointed by the governor of Illinois to serve on the Illinois Board of Health from 2002 to Co-CEO/Executive Director Co-CEO/Executive Director Gerald C. Weinberg Senior Staff Valerie A Cwik, M.D. Senior Vice President of Research & Health Care Services Kevin W. Moran Program Development Staff & Volunteer Statistics Full Time Staff 4 Part Time Staff 0 Staff Retention Rate % 75 Professional Development Contractors 5 Volunteers 50 Management Reports to Board CEO/Executive Director Formal Evaluation Senior Management Formal Evaluation nmanagement Formal Evaluation Collaborations 7

8 Collaborations recognized at a national level where we have strong fundraising based local partnerships include: IAFF NALC DECA 7-11 Lowe s Home Improvement Additionally, through our generous local collaboration with Sarasota Memorial Hospital we are able to offer our local clinic programs and services. Comments Management Comments by Organization 8

9 GOVERNANCE Board Chair Board Chair Dr. R. Rodney Howell M.D. Company Affiliation MDA Board Term June 2013 to June 2014 Board Chair Board Co-Chair Board Co-Chair Mr. Christopher J Rosa Company Affiliation MDA Board Term July 2011 to June 2012 Board Members Name Affiliation Status Dr. Stanley Appel, MD MDA Voting C Thomas Caskey MD MDA Voting Bart Connor MDA Voting Harold Crump MDA Voting Benjamin Cumbo, III Community Volunteer Voting Joseph DiMartino Emeritus Life Member Voting Daniel G Fries Community Volunteer Voting Brad Henry community volunteer Voting Dr. R. Rodney Howell M.D. Community Volunteer Voting Dave Hutton community volunteer Voting Louis Kunkel, PhD Community Volunteer Voting Timmi Masters MDA Voting Christopher J Rosa PhD MDA Voting Charles Schoor Esq MDA Voting John Tognino Community Volunteer Voting Victor Wright Community Volunteer Voting Board Demographics - Ethnicity African American/Black 2 Asian American/Pacific Islander 0 Caucasian 14 Hispanic/Latino 0 Native American/American Indian 0 Other 0 0 9

10 Board Demographics - Gender Male 16 Female 0 t Specified 0 Governance Board Term Lengths 1 Board Term Limits 99 Board Orientation Number of Full Board Meetings Annually 11 Board Meeting Attendance % 89 Board Self-Evaluation Written Board Selection Criteria Percentage of Board Making Monetary Contributions 100 Percentage of Board Making In-Kind Contributions 100 Constituency Includes Client Representation 10

11 FINANCIALS Current Financial Info Fiscal Year Begins 2017 Fiscal Year Ends 2017 Projected Revenue $935, Projected Expenses $93, Total Projected Revenue includes "in-kind" contributions/ donations Endowment Value $0.00 Spending Policy N/A Spending Policy Percentage 0 Tax Credits Capital Campaign In a Capital Campaign Campaign Purpose Campaign Goal 0 IRS Form 990s Form Form 990-T 2012 Form Form Form Form Audit/Financial Documents Financial Statement 2013 Financials IRS Financial Audit IRS Financial Audit Audited Financials 2009 and 2010 Audited Financials 2008 and 2009 Solvency Short Term Solvency 11

12 Fiscal Year Current Ratio: Current Assets/Current Liabilities Long Term Solvency Fiscal Year Long-Term Liabilities/Total Assets 74% 48% 51% Historical Financial Review Revenue and Expenses Fiscal Year Total Revenue $140,371,235 $150,325,720 $159,007,986 Total Expenses $3,487,202 $148,005,192 $166,824,047 Revenue Sources Fiscal Year Foundation and Corporation $0 $0 $0 Contributions Government Contributions $283,164 $0 $0 Federal $0 $0 $0 State $0 $0 $0 Local $0 $0 $0 Unspecified $283,164 $0 $0 Individual Contributions $25,996,705 $25,645,964 $22,805,964 Indirect Public Support $579,185 $685,404 $723,715 Earned Revenue $7,599 $128,550 $0 Investment Income, Net of Losses $4,427,658 $4,035,966 $11,276,761 Membership Dues $0 $0 $0 Special Events $108,533,776 $119,063,052 $124,201,546 Revenue In-Kind $507,905 $532,367 $0 Other $543,148 $731,400 $0 Expense Allocation Fiscal Year Program Expense $97,336,555 $112,444,980 $128,614,787 Administration Expense $12,823,614 $14,025,336 $14,632,131 Fundraising Expense $21,355,553 $21,534,876 $23,577,129 Payments to Affiliates $0 $0 $0 Total Revenue/Total Expenses Program Expense/Total Expenses 2791% 76% 77% Fundraising Expense/Contributed Revenue 16% 15% 16% Assets and Liabilities Fiscal Year Total Assets $97,787,518 $102,852,460 $100,099,622 Current Assets $32,233,308 $92,107,341 $85,964,010 Long-Term Liabilities $71,993,701 $49,681,789 $51,104,926 Current Liabilities $19,632,537 $32,039,474 $47,530,168 Total Net Assets $6,161,280 $21,131,197 $1,464,528 Top Funding Sources 12

13 Fiscal Year Top Funding Source & Dollar Amount Fundraising $108,533,776 Fundraising $119,063,052 Fundraising $124,201,546 Second Highest Funding Source & Dollar Contributions, gifts, Contributions, gifts, Contributions, gifts, Amount grants $25,996,705 grants $25,645,964 grants $22,805,964 Third Highest Funding Source & Dollar Amount Investment Income $4,427,658 Investment Income $4,035,966 Investment income $11,276,761 Comments Financial Comments by Foundation Projected revenue for the Southwest Florida office is $935,000 and the organization tries to keep expenses down to 10% or less, making the projected expenses $93,500. Foundations and corporations are included with individual contributions as they are not separated in the 990 or audit. Financial figures are taken from the audited financial statements which include financial information for all locations. It should be noted that the 990s in The Giving Partner were not filed with the Internal Revenue Service and were prepared for informational purposes only and include revenue and expense associated solely with the local office. Financial information for 2013 and 2014 was taken from the Federal 990 as the financial statement provided did not include ample detail for reporting purposes. 13

14 PLANS, POLICIES & LICENSES Plans Fundraising Plan Communication Plan Strategic Plan Years Strategic Plan Considers Management Succession Plan Continuity of Operations Plan N/A Policies Organizational Policies and Procedures Written Conflict of Interest Policy ndiscrimination Policy Directors and Officers Insurance Policy Whistle Blower Policy Document Destruction Policy Government Licenses Is your organization licensed by the Government? Created Copyright