Muscular Dystrophy Association
6315 Presidential Court Ste 140
Fort Myers FL 33919
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.
CEO/Executive Director Mr. Steven Derks
Board Chair Dr. R. Rodney Howell M.D.
Board Chair Affiliation MDA
General Info
Organization DBA
Supported Organization
Former Names
Tax Exempt Status Public Supported Charity
Incorporation Year 1950
Awarded competitive grant from Community Foundation in the last 5 years?
State Charitable Solicitations Permit Yes Sept 2016
State Registration Yes 0
IRS Letter of Determination
Financial Summary
Projected Revenue $935,000.00
Projected Expenses $93,500.00
Other Documents
Impact Statement
The MDA is making great strides in the care and treatment of individuals with neuromuscular conditions. This year alone we have seen many new 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. MDA cost $300 per appointment, 545 registered family members in need.
  • Genetic testing vital to our family members for inclusion in clinical trials, $900-$2000 per test, 545 registered members in need.
  • Summer Camp for registered children ages 6-17, no cost to families. MDA cost $800 per child, 41 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.
  • Support Groups provided to families for education and support, MDA cost $100 per session, 12 sessions needed per year.
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, The MDA will celebrate 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 Tucson, 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.

Areas Served
Areas Served
FL- Charlotte
FL- DeSoto
FL- Hardee
FL- Lee
FL- Manatee
FL- Sarasota
FL- Hardee
Service Categories
Primary Org Type Medical Research
Secondary Org Type Health Care
Tertiary Org Type Human Services
MD, MDA, muscular dystrophy, neuromuscular disease, ALS, spinal atrophy, research, muscle, disability
Statement from the Board Chair/Board President
Statement from the CEO/Executive Director
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.
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.
Budget $96,000
Category Health Care, General/Other
Program Linked to Organizational Strategy Yes
Population Served Other Health/Disability
Short Term Success
Short term measurement of success would be the continuing growth of the clinic due to the excellent care received by our family members.
Long Term Success
The long term measurement of success for this program would ideally be the care and curing of the 43 neuromuscular diseases we cover.
Program Success Monitoring
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.
Program Success Examples
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.
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.
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. 


Budget $32,000
Category Youth Development, General/Other Youth Leadership
Program Linked to Organizational Strategy Yes
Population Served Children and Youth (0 - 19 years)
Short Term Success
Provide every child that attends an amazing experience that fosters hope, friendship and self confidence.
Long Term Success
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.
Program Success Monitoring
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.
Program Success Examples
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.
Family circles are support groups provided by the MDA both for the entire MDA population in out general sessions and disease or concern specific like our ALS or Caregivers group. These sessions provide important socialization and information sharing as well as fostering a sense of community among the attendees. We provide a variety of guest speakers and activities, everything from the latest in bracing options to a container garden demonstration. We find that the attendees are more open and accepting of medical information when it is either shared with them by someone in the same situation, or it is shared by a professional in a non clinical setting. 
Budget $3,600
Category Health Care, General/Other
Program Linked to Organizational Strategy Yes
Population Served Other Health/Disability Other Named Groups
Short Term Success
As our program evolves and grows we will see more groups stabilize and commit to a meeting schedule like our CMT folks in Sarasota, who now meet every  other month. Each meeting new members are attending.
Long Term Success
The long term goal for this program is to have disease and need specific sessions every month with great participation and provide our MDA community with the knowledge and support they need.
Program Success Monitoring
We have a healthcare services report that is submitted to our Regional office weekly to monitor outreach programs like our Family Circles. Sessions are also occasionally attended by higher ranking MDA staff to assure that the highest quality sessions are being provided.
Program Success Examples
We recently had a CMT Family Circle during which we had an expert on bracing and orthotics, which are vital to the CMT community. One gentleman in attendance has been noncompliant with brace wearing for many years. Our guest expert spent quite some time discussing the negative impact of not wearing your braces, up to and including amputation. The next day the noncomplient gentleman called and asked for a referral to go see our bracing expert.
Program Comments by Organization
Program Comments by Foundation
CEO/Executive Director
CEO/Executive Director Mr. Steven Derks
CEO Term Start Sept 2012
CEO/Executive Director Email

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 2008.

Former CEOs/Executive Directors
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 Yes
Contractors 5
Volunteers 50
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation Yes
Senior Management Formal Evaluation Yes
Non-Management Formal Evaluation Yes
Collaborations recognized at a national level where we have strong fundraising based local partnerships include:
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.
External Assessments and Accreditations
Awards & Recognition
Risk Management Provisions
Government Licenses
Organization Licensed by the Government
Fundraising Plan No
Communication Plan No
Strategic Plan No
Strategic Plan Years N/A
Strategic Plan Adopted 0
Management Succession Plan No
Continuity of Operations Plan No
Nondiscrimination Policy No
Whistle Blower Policy No
Document Destruction Policy Yes
Directors and Officers Insurance Policy No
Policies and Procedures Yes
Management Comments by Organization
Management Comments by Foundation
Planning & Policies Comments by Organization
Planning & Policies Comments by Foundation
Multi-Media Comments by Organization
Board Chair
Board Chair Dr. R. Rodney Howell M.D.
Company Affiliation MDA
Board Term June 2013 to June 2014
Board Chair Email
Board Members
Board Members
Dr. Stanley Appel, MD MDA
Bart Connor MDA
Benjamin Cumbo, III Community Volunteer
Joseph DiMartino Emeritus Life Member
Steve Farella Community Volunteer
Daniel G Fries Community Volunteer
Brad Henry community volunteer
Dr. R. Rodney Howell M.D.Community Volunteer
Dave Hutton community volunteer
Louis Kunkel, PhD Community Volunteer
Timmi Masters MDA
Olin F Morris MDA
Christopher J Rosa PhDMDA
Charles Schoor EsqMDA
John Tognino Community Volunteer
Victor Wright Community Volunteer
Student serving on the board through Community Youth Development? No
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 2
Asian American/Pacific Islander 0
Caucasian 14
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Gender
Male 16
Female 0
Unspecified 0
Board Term Lengths 1
Board Term Limits 99
Board Orientation Yes
Number of Full Board Meetings Annually 11
Board Meeting Attendance % 89
Board Self-Evaluation Yes
Written Board Selection Criteria No
Board Conflict of Interest Policy No
% of Board Making Monetary Contributions 100
% of Board Making In-Kind Contributions 100
Standing Committees
Governance Comments by Organization
Governance Comments by Foundation
Fiscal Year Projections
Fiscal Year Begins 2016
Fiscal Year Ends 2016
Projected Revenue $935,000.00
Projected Expenses $93,500.00
Endowment Value
Endowment Spending Policy N/A
Endowment Spending Policy %
Capital Campaign
In a Capital Campaign No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
Anticipate Campaign within 5 years?
Historical Financial Review
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201420132012
Foundation and
Corporation Contributions
Government Contributions$283,164$0$0
Individual Contributions$25,996,705$25,645,964$22,805,964
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
Expense Allocation
Fiscal Year201420132012
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 Expenses40.251.020.95
Program Expense/Total Expenses2791%76%77%
Fundraising Expense/Contributed Revenue16%15%16%
Assets and Liabilities
Fiscal Year201420132012
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
Fiscal Year201420132012
Top Funding Source & Dollar AmountFundraising $108,533,776Fundraising $119,063,052Fundraising $124,201,546
Second Highest Funding Source & Dollar AmountContributions, gifts, grants $25,996,705Contributions, gifts, grants $25,645,964Contributions, gifts, grants $22,805,964
Third Highest Funding Source & Dollar AmountInvestment Income $4,427,658Investment Income $4,035,966Investment income $11,276,761
CEO/Executive Director Compensation N/A
Co-CEO/Executive Director Compensation
Tax Credits Yes
Short Term Solvency
Fiscal Year201420132012
Current Ratio: Current Assets/Current Liabilities1.642.871.81
Long Term Solvency
Fiscal Year201420132012
Long-Term Liabilities/Total Assets74%48%51%
Financials Comments
Financial Comments by Organization
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.
Nonprofit Muscular Dystrophy Association
Address 6315 Presidential Court Ste 140
Fort Myers, FL 33919
Phone 239 437-6900