The Myositis Association dba SW FL Myositis KIT
1940 Duke Street
Ste 200
Alexandria VA 22314
The mission of The Myositis Association is to support myositis patients and their families by helping members understand and cope with their disease, connect the Medical Advisory Board to the medical and patient community and to increase funding for myositis research. 
CEO/Executive Director Robert Goldberg
Board Chair Mr. John McClun
Board Chair Affiliation Retired military
General Info
Organization DBA
Southwest Florida Myositis Keep In Touch Support Group
SW FL Myositis KIT
Supported Organization SW FL Myositis KIT Support Group
Former Names
Myositis Association of America, Inc.
Tax Exempt Status Public Supported Charity
Incorporation Year 1993
State Charitable Solicitations Permit Yes Sept 2018
State Registration Yes Sept 2018
Financial Summary
Note: Revenue includes the value of in-kind contributions/donations
IRS Letter of Determination
IRS Letter of Determination (group)View
Other Documents
Juvenile MyositisView
Myositis SW Florida ChapterView
History of the SW Florida Myositis ChapterView
Myositis NewsletterView
Impact Statement

Accomplishments: TMA provided $525,000 in grants to researchers delving into causes, treatment and an eventual cure for myositis. TMA conducted their annual patient conference in San Diego with more than 500 attendees. TMA's Medical Advisory Board authorized an additional $350,000 in grants for 2018.  TMA published a comprehensive Physicians Guide to Myositis that was distributed to 7,500 TMA members to give to their physicians.  TMA presented grand rounds about myositis to 12 medical schools in 2017.

Accomplishments: SW FL KIT: In 2017, thanks to funding support from the Patterson Foundation and Giving Challenge, we delivered a first ever symposium for local doctors. We also sent four individuals to TMA's annual conference. We are developing a new livestream meeting format to enable homebound members to 'attend' our meetings.

TMA's 2018 goals include:  Revising and reprinting the complete patient guide to myositis: Myositis 101; funding $325,000 in new medical research; building awareness of myositis around TMA's 25th Anniversary; selecting a new Executive Director to replace our retiring Executive Director; helping to facilitate and recruit patients for 3-5 ongoing clinical trials focused on myositis.

The SW FL KIT group will build on its successful doctors' symposium and also hold an awareness event for the public. It will increase its membership participation by 10%, in-person meeting attendance and by 15% using other means, including e-mail and other media to update the local community including doctors, about the patient benefits in belonging to our support group. KIT meetings will be livestreamed and available online for those unable to attend  in person.
Needs Statement
  1. TMA will be conducting a 25th Anniversary Celebration throughout 2018 including awareness campaigns, special publications, an  Anniversary Gala, and social media campaigns with messaging, anniversary logos and images, etc. Funds needed:  $50,000
  2. TMA has conducted grand round presentations at 35 medicals schools to date and wants to reach the other 100 through mailings, advertisements, etc.  All expenses of the presenters who will be from our Medical Advisory Board will be covered by TMA and we are hoping to do an additional 20 grand rounds in 2018.  Funds needed:  $35,000 
  3. The SW FL KIT has at least 50 members unable to attend our quarterly meetings in Sarasota. It would benefit these home-bound people if we could develop and deliver an electronic meeting to them. We are currently testing a livestream system to meet this need. Funds spent to date are  $1,000. To complete delivery of this technology will cost an additional $1,000.
  4. Researchers are making progress in the diagnosis and treatment of myositis. Trials are constantly offered as proof that there is light at the end of this tunnel. The SW FL KIT would like to allocate up to $10,000 raised from the Giving Challenge to add to the TMA's research fund.  
  5. While KIT meetings are an extremely valuable resource that provides attendees with real-world information and support, TMA's annual patient conference is a vastly expanded version of a KIT meeting. The cost to attend these conferences is approximately $1,000/person so our KIT has offered 'scholarships' for our members to attend. We would like to send up to ten members (and their caregivers) to TMA's 2018 conference. The cost for this could be up to $20,000.
Background Statement

In 1993 The Inclusion Body Myositis Association was formed, supporting 15 patients. In 2002 the name was changed to The Myositis Association, (TMA). Myositis is categorized by the National Institutes of Health as a “rare disease” and the total affected population is difficult to quantify. All of the current known forms cause extreme muscle weakness that can rapidly cause patients to go from a "normal" adult to bed or wheel-chair bound. A current estimate is that there are between 50,000 and 75,000 patients in the US.

Critical to supporting patients and their families is the formation of KITs or Keep In Touch support groups. The Southwest FL group started in 2006 with 3 members and now supports over 180 (recognized as one of the largest and most active in the USA). Quarterly meetings, frequent newsletters, quarterly social gatherings and cards, e-mail and phone calls enable us keep in touch with members, many of whom cannot leave their homes because of their disease. New members are often heard to say "Before I found this KIT I had never even talked with another person with my disease! Thank you for this group!"

The dates and milestones above reflect how TMA has impacted the overall population of myositis patients.

Here in Southwest Florida, the support group or “KIT” (which stands for ‘keep in touch’) also has an impressive history.

In 2006 there were no support groups in Florida. Two patients met and our KIT was born. The first meeting attracted only three patients but in the ten years of regular quarterly meetings, the group has grown to over 180 members. Not all can attend every meeting and some have never attended. They may be confined to their bed, unable to drive or simply prefer to keep in touch in ways other than in person. This KIT group has been extremely active and has found many ways to raise awareness of our disease. We’ve been interviewed on ABC-7 twice, had numerous articles printed in several local papers, held fundraisers (we even brought TMA’s spokesperson, the model Fabio to town) and have been proud to donate over $77,000 to TMA. But our group’s bottom line has always been to ensure that anyone who contacts us knows that they ‘are not alone.’

Areas Served
Areas Served
FL- Sarasota
FL- Manatee
FL- Charlotte
FL- DeSoto
FL- Lee
Areas Served Comments

While TMA serves patients and their families around the globe, the SW FL Myositis "Keep In Touch" group provides this support to those living between Ocala and Naples, along the southwest coast of Florida. Quarterly meetings are held in Bradenton, FL. We also maintain contact with other KITs in order to share 'best practices'. Our KIT has been instrumental in development of other KITs around Florida, including the areas of Miami, Orlando, Talahassee and Ft. Pierce.

Service Categories
Primary Org Type Health Care
Secondary Org Type Medical Research
Tertiary Org Type
Statement from the Board Chair/Board President

How easy it is to take our good health for granted! My wife Bonnie and I were enjoying our mid-40’s lifestyle of many active adults. One of our favorite past-times was exploring on our bicycles. I became so involved in biking that I volunteered to become a bike-safety instructor, helping others to safely enjoy our sport. Volunteering to instruct others was a natural offshoot of my love of the sport.

That is until one day when I was lifting my bike overhead to hang it on the rack in our garage. “That’s funny”, I thought. ”That seemed to take more effort than usual. And of course I ignored this small sign and attributed it to tired muscles from the ride or maybe a bit of aging. But the weakness persisted and began to manifest in other subtle ways. All of a sudden I had to admit that something was wrong so I went to my family physician who, after numerous tests, was unable to diagnose my problem.

Because I’m familiar with computers and the internet, I began to research for myself what could be causing me to seemingly get nominally but steadily weaker. I decided to go to the experts at NIH in Maryland who performed more tests and diagnosed me as having polymyositis. I began a regimen of the many medications used to treat polymyositis. And they weren’t working. Finally almost 13 years later, I visited the Myositis Center at Johns Hopkins and again submitted to MRI’s, CTs and muscle biopsies. Now the diagnosis was changed to Inclusion Body Myositis, a form of myositis that presents in a way similar to polymyositis but eventually becomes clearly a different disease; one for which unfortunately, there is no proven treatment.

I reflected on this experience and determined to help others to not have to go through what I did, waiting years for a correct diagnosis. Statistics in the rare disease community have shown that the average patient visits at least five doctors over three years before getting a diagnosis. This is a terrible situation that we must remember, also means the patient is probably getting worse. And in the case of myositis diseases, can find themselves in a wheelchair or even bed-bound.

I had been a member of TMA for some years and had participated in some KIT support group activities in various places where we lived. In 2015 I was asked to join TMA’s board of directors and I gladly accepted. I wanted to focus my volunteer energies on helping TMA’s members in at least two ways. First, I am well-versed in website design and so offered to upgrade and enhance TMA’s site. This project will complete sometime in the first half of 2018. Secondly, I want for all TMA members to be able to access KIT and TMA events, from wherever they are. I am working on a project to help our 40 KITs around the country to find ways to livestream their meetings and other events. Virtual meetings are an everyday occurrence in the business world; we want it to be one in the myositis patients’ world as well. As we keep saying, we want our TMA members to know that they are not alone!
Statement from the CEO/Executive Director
The Myositis Association, like many other rare disease organizations, serves a small fraction of the U.S. population and is a voice for those unlucky few who have to live with a disease like myositis. For many people who have myositis, they are grateful that there is ANY organization to support them. The loneliness of having a rare disease can be haunting, and one of TMA’s strategic goals is to help patients overcome their loneliness through support groups, on-line and print information, an annual conference and connections to expert physicians who can help them cope with their disease.

What makes The Myositis Association special to those seeking support and information is the strength of our Medical Advisory Board and the intimacy of our support network in Florida. Support does not stop when the support meeting adjourns. Leaders of our support groups remain in touch with patients between meetings, through emails and phone calls. Informal social events are arranged to keep everyone in touch and to retain that personal connection between patients. Our Medical Advisors make their contact information available to any patients searching for additional information or wanting their personal physician to be able to consult with a physician more experienced in treating this myositis.

TMA is an organization that is very focused on maintaining these personal connections and seeing that patients have what they need to best treat and cope with their disease. Growing our support network to reach all who need help is a challenge because there are many geographic areas that do not have a critical mass of patients to make face-to-face meetings feasible. In these situations, TMA has established a “virtual network” to connect patients through email and phone calls. TMA has also established an ambassadors program to enable patients to be mentored and coached by someone who has their same form of myositis and who can help them anticipate and overcome the challenges their disease will present to them.

Though the staff of TMA is small (4FTEs), the reach and desire to make sure patients get the help they need is enormous and never-ending. Between our staff and the leaders and members of support groups like the one in southwest Florida, we continue to show our members that ‘They are NOT alone’.

Description The annual TMA conference enables patients and their companions/caregivers have a unique opportunity to be immersed in learning about their disease and how to cope with it. It is also a clear example for them that they are not alone.
Budget $10,000
Category Diseases, Disorders & Medical Disciplines, General/Other Musculoskeletal & Connective Tissue Diseases
Program Linked to Organizational Strategy No
Population Served Aging, Elderly, Senior Citizens Elderly and/or Disabled General/Unspecified
Short Term Success

For up to ten couples that attend TMA’s annual patient conference, the KIT will help these patients and their caregivers to make extraordinary, valuable, tangible contacts with others who share their disease and how it affects their families. In addition to contacts with other patient families, our members will have participated in unique seminars by the world’s leading experts in all aspects of Myositis. Being face to face with these doctors, therapists and researchers will present our members with new, optimistic facts about their disease. This new-found knowledge and the new contacts made will empower our members to come home from the conference with a new-found confidence in their future as they manage their disease.

Long Term Success

KIT members who have benefited from the opportunity to participate in TMA’s annual conference will have their lives changed forever. First, their confidence will grow as they continue to Keep In Touch with the contacts they made and who let them know they are not alone in their Myositis journey. Second, they will have a greatly expanded view of TMA and the Medical Advisory Board doctors whom they met at the conference. These additional contacts form a ring of support that members can now confidently rely upon to help them with future questions and concerns. The world of Myositis research and treatments is constantly evolving and those who were provided financial assistance to attend a TMA conference are in a perfect position to keep abreast of these changes and to take advantage of new developments that pertain to themselves. Acting as ‘seed agents’ those who benefited from the help to attend a conference can then encourage others to apply as well.

Program Success Monitoring

Participating members will be surveyed about their conference attendance. First, to qualify for financial aid, they will be asked to complete an application which asks what they hope to accomplish by attending. Once they have been selected by committee, they will be surveyed about their knowledge and expectations about the conference and how it will impact them and their companion. Their companion will also be surveyed; asking them to explain what aspects of their current situation they hope to change. After the conference, the patient and companion will be asked to complete a second survey about what they learned, contacts they made and seminars in which they participated. This survey will take place within two weeks of their return. They will also be asked to speak at a future KIT meeting about their experience and to provide input for a newsletter article as well. Finally, they will be asked to participate in the vetting process for the following year’s applicants.

Program Success Examples

In 2017, an elderly patient who lives in a very remote area of Florida, heard about our group and had a friend drive her to a KIT meeting. As a result of the information and enthusiastic support she received from everyone, she determined that she would go to the conference and learn what she could. She did not apply for a scholarship but went at her own expense. She returned with at least two very positive perspectives. First, she was amazed at the level of knowledge shared equally between esteemed medical experts and patients. Second, she found a new doctor to replace the one who had told her he knew nothing about her disease. After her first appointment with the new doctor, she shared that she'd never felt so well cared-for in her life. And her husband who had been skeptical of the whole  process was also amazed and grateful.

Description In 2017 the SW FL KIT held a first-ever doctors symposium in Lakewood Ranch, FL. Collaborating with Manatee and Sarasota Medical Societies, doctors were invited to a dinner and CME event and a presentation by a noted Myositis Neurologist. 
Budget $3,000
Category Diseases, Disorders & Medical Disciplines, General/Other Musculoskeletal & Connective Tissue Diseases
Program Linked to Organizational Strategy Yes
Population Served Aging, Elderly, Senior Citizens Elderly and/or Disabled General/Unspecified
Short Term Success In 2017, 20 medical professionals were presented with what they should know about diagnosing and treating myositis diseases. Since the family doctor is often the first to see a myositis patient who is looking for a diagnosis, this symposium provided specific tools doctors can use. In addition, at each table of six to eight doctors, one KIT member was available to provide some additional 'real-patient' perspective. 
Long Term Success In the coming years our KIT hopes never again to hear of patients who are told by their doctors that they don't know anything about their disease. While it will be difficult to measure this success, it is our hope that it makes itself known.
Program Success Monitoring After the 2017 symposium the attending doctors were surveyed. Our KIT members are in the process of developing a 2018 format and will base much of its content on what we learn from the 2017 group.
Program Success Examples A young woman attended the 2017 event and when asked about her interest, told us she is a medical student at a local school. She heard about the symposium from her doctor/father who invited her. She was amazed at the content and complexity of the presentation and said she would take it back to her med school friends.
Description Each year, the SW FL KIT has welcomed friends and family to attend an awareness event. While these people know we have a rare disease, they don't know how it can be impacting their loved ones in ways unseen. Our events provide patients to speak frankly about their lives and how they are coping. We also encourage our caregivers to speak up about their life challenges with myositis.
Budget $2,500
Category Diseases, Disorders & Medical Disciplines, General/Other Musculoskeletal & Connective Tissue Diseases
Program Linked to Organizational Strategy Yes
Population Served Aging, Elderly, Senior Citizens Elderly and/or Disabled General/Unspecified
Short Term Success In 2016 and 2017, the SW FL KIT held awareness events for our friends and families. In each case there were opportunities for everyone, both patients and friends, to take the microphone and speak about their myositis observations. Our goal is that 100% of our attendees will see each other a bit differently. 
Long Term Success At the 2017 event, we not only talked about the issues facing myositis patients and their families but what can be done to help them. As a result, there were at least four recommendations for equipment or therapies that we later outlined in a document to share with all members.
Program Success Monitoring At each event we ask for feedback on a form that enables us to make changes to future programs. One result of 2016's event was the addition of inviting guests to speak in addition to our members.
Program Success Examples One woman who said that her hand strength was a vexing issue, was referred to a therapist who has helped her. 
Program Comments by Organization

There may be no more frightening feeling than that of being alone. As a child we probably cried loudly to attract a parent to come to comfort us in our fear of our aloneness. But as adults, we don't cry; we don't always make our fear and discomfort known.

It's an unusual circumstance that many of the people in the SW FL KIT group tell us that they have always been independent. They were the strong one in their family or their workplace. And all of us grew up confident that we could handle anything life presented to us.

And then we were diagnosed with a myositis disease. First we had to understand the disease and whatever our doctor could tell us about it (assuming that doctor knew enough to tell). Then we had to try to as they say "wrap our heads around" what this would mean to us; to our families and for our future. "Wrap our head around" is a good phrase for us; we wanted to 'think' our way around this disease. In reality, that's almost impossible.
Then we found our way to this KIT support group. We used various means; the internet to find TMA is key but in addition, there is word of mouth sitting in the doctor's waiting room. There is seeing a news article about a KIT event. Social media is beginning to help as well. And word of mouth cannot be ignored. 
Then there is that first human contact. Oh my goodness, I am NOT alone. I can talk with another person who has the same disease. Their spouse has the same concerns. They are taking the same medications. I'm not alone!
We have had people come to our meetings and tell us that they were diagnosed as many as ten years ago. And at no time did their doctor tell them about a support group or did they ever talk to another person who had walked a mile in their shoes. This is a tragedy that every member of our KIT is committed to stopping. KIT stands for Keeping In Touch. It's what we do.
CEO/Executive Director
CEO/Executive Director Robert Goldberg
CEO Term Start Aug 2002
CEO/Executive Director Email
Experience Mr. Goldberg has a demonstrated record of accomplishment building and assisting non-profit health associations like TMA. Mr. Goldberg served as vice president of the National Health Council, where he directed its operations and membership services for dozens of health non-profits, including TMA. In that role, Mr. Goldberg was responsible for membership recruitment and member services, program development and fundraising, strategic planning, web site development and human resources. His extensive prior experience includes serving as director of admissions at two major academic medical centers in the Washington D.C area, Senior Capitol Hill Coordinator for a non-profit organization, and Congressional Aide for former U. S. Senator Richard Schweiker.
Former CEOs/Executive Directors
Ms. Nancy Armentrout Jan 1998 - Aug
Senior Staff
Staff & Volunteer Statistics
Full Time Staff 4
Part Time Staff 0
Staff Retention Rate % 100
Professional Development Yes
Contractors 5
Volunteers 55
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation Yes
Senior Management Formal Evaluation Yes
Non-Management Formal Evaluation No

TMA is a member of AARDA (American Association of Rare Diseases). TMA supports Cure JM which concentrates on raising funds to research the type of myositis that strikes children around the age of four. TMA also collaborates with the National Health Council and ITEM Coalition.

National Organization for Rare Disorders - Member2000
Better Business Bureau Wise Giving Alliance - Organization2000
External Assessments and Accreditations
Charity Navigator2015
Better Business Bureau Wise Giving Alliance2014
Awards & Recognition
Meets Standards of ExcellenceNational Health Council2015
Risk Management Provisions
Government Licenses
Organization Licensed by the Government No
Fundraising Plan Yes
Communication Plan Yes
Strategic Plan Yes
Strategic Plan Years 1
Strategic Plan Adopted Jan 2018
Management Succession Plan Yes
Continuity of Operations Plan Yes
Nondiscrimination Policy Yes
Whistle Blower Policy Yes
Document Destruction Policy Yes
Directors and Officers Insurance Policy Yes
Policies and Procedures No
Management Comments by Organization

TMA's challenges are primarily those of serving a population of patients and their families, many of whom do not even know of our existence. To combat this, TMA's staff of 4 FTEs is working to ensure that the medical profession will refer new patients and their families to TMA, once a diagnosis is confirmed. In 2015 TMA instituted a "visiting professors" program which sent members of our Medical Advisory Board to medical schools around the country. At face-to-face sessions, our doctors were able to increase students' understanding of and ability to diagnose myositis diseases. This program has continued to this day. TMA has also gathered input from KITs like the one in SW FL, listing the names and specialties of doctors in that area. TMA then sent materials that will help those doctors not only to better understand the disease but to see the substantial benefit in referring their patients to TMA and the KIT in their area.

On a smaller but no less important scale, the SW FL KIT is working to share important information with local doctors. We have produced and provided to our members, brochures and booklets that can be handed not only to doctors but their office staff as well. In May, 2016, Myositis Awareness and You Month, members took materials with them to their appointments, sharing their passion for spreading the word about the value of their KIT support group. In 2017, we held the first ever Myositis Awareness event for Medical Professionals. 

Multi-Media Comments by Organization

There are many pictures and videos we wish we could have included but this one photo really tells a story. Because it is so difficult for non-specialist doctors to diagnose and treat myositis patients, the SW FL KIT Support group coordinated with the Manatee and Sarasota County Medical Societies to deliver a special symposium on this rare disease. The comments from doctors who attended showed that they had learned new and important diagnosis and treatment information. Note the young woman in the forefront of the picture. Not yet a doctor, she is a med student interested in learning more than just what she is learning in school. The SW FL KIT thanks the Sarasota Community Foundation and the Patterson Foundation for the opportunity to raise funds to enable us to deliver this important message.

Board Chair
Board Chair Mr. John McClun
Company Affiliation Retired military
Board Term Jan 2018 to Dec 2018
Board Chair Email
Board Members
Board Members
Mr Terry Anderson Retired
Ms Martha Arnold Community Volunteer
Ms. Laurie Boyer Community Volunteer
Mrs. Doreen Cahoon Retired
Mr. Christopher Dotur Retired Military
Dr. Renee Lantner Physician
Mr. Roger Marken Retired
Mr. Jim Mathews Semi-Retired
Mr. John McClun Retired
Mr. Wayne Mortenson Community Volunteer
Mrs. Carla Stevenson Retired
Mr. John Suttle Attorney
Dr. Steve Ytterberg Mayo Clinic, Rochester, MN
Mr. Patrick Zenner Retired
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 13
Hispanic/Latino 0
Native American/American Indian 0
Other 0 1-Asian
Board Gender
Male 9
Female 5
Unspecified 0
Board Term Lengths 2
Board Term Limits 2
Board Orientation Yes
Number of Full Board Meetings Annually 5
Board Meeting Attendance % 90
Board Self-Evaluation Yes
Written Board Selection Criteria Yes
Board Conflict of Interest Policy Yes
% of Board Making Monetary Contributions 100
% of Board Making In-Kind Contributions 100
Standing Committees
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
Program / Program Planning
Scientific Advisory
Governance Comments by Organization

TMA's governance challenge is primarily finding new board members. It is easy to attract either patients or their caregivers to our board and in the past these have been valued members. However, due to the nature of myositis diseases, both patients and caregivers are limited in their ability to travel to meetings. Therefore, many of our board members' participation has had to be via conference call. These members actively participate in committees and other activities; they are just unable to travel. Another challenge is the need to represent all three disease types and all geographic regions. 


The SW FL KIT experiences the same challenge. Our group is currently led by five women, four of whom have a myositis disease and one who is a caregiver. Organizing meetings, arranging for speakers, meals, handouts and venues is not particularly difficult for most people. But with myositis, the four of us find that our energy levels are extremely limited and thus we are always working to recruit additional help. Our caregiver leader is very energetic and committed but her husband is severely disabled by his IBM and she must spend many hours each day, attending to his ADLs (activities of daily living).

Our KIT members depend on being able to attend meetings and events that are uplifting and educational. Many do not have financial resources to afford meeting registration fees. Finding ways to help all members is an ongoing challenge.
Fortunately for our group, there are many who are willing to help, even in seemingly small ways. One caregiver is responsible to see that there is plenty of bottled water at each meeting. One PM patient who is confined to a scooter is also an accomplished videographer so is responsible to record our special meetings. Several caregiver men are always available to help set up and take down meeting rooms. And one IBM patient has volunteered to ensure that there will always be chocolate for every lunch dessert. He maintains contact with at least six other members who bring desserts to each meeting.
This teamwork and family-type commitment is what makes our KIT and TMA a strong voice for support of our myositis families. 
Current Year Projections
Tax Year Start Month Jan
Tax Year Start Day 01
Tax Year Begins 2018
Tax Year End Month Dec
Tax Year End Day 31
Tax Year Ends 2018
Projected Revenue $2,154,082.00
Projected Expenses $1,738,278.00
Total Projected Revenue includes "in-kind" contributions/ donations No
Organization has Endowment Yes
Endowment Value $1,000.00
Capital Campaign
Currently In a Capital Campaign No
Anticipate Campaign within 5 years? No
Campaign Purpose
Campaign Goal
Amount Raised To Date 0 as of 0
IRS Form 990s
Audit/Financial Documents
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 Year201620152014
Foundation and
Corporation Contributions
Government Contributions$101,487$181,582$219,997
Individual Contributions$1,117,659$1,162,355$2,329,477
Investment Income, Net of Losses$41,888$30,572$89,145
Membership Dues$0$0$0
Special Events$59,022$65,066$63,204
Revenue In-Kind$158,009$162,565$251,682
Expense Allocation
Fiscal Year201620152014
Program Expense$1,234,751$1,058,264$1,047,891
Administration Expense$181,161$184,529$173,730
Fundraising Expense$128,662$135,597$115,814
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses0.911.112.02
Program Expense/Total Expenses80%77%78%
Fundraising Expense/Contributed Revenue10%10%4%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$2,607,075$2,693,796$2,600,936
Current Assets$2,605,048$2,690,489$2,586,841
Long-Term Liabilities$0$0$0
Current Liabilities$59,504$91,281$103,475
Total Net Assets$2,547,571$2,602,515$2,497,461
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar AmountContributions, gifts, grants $1,117,659Contributions, gifts, grants $1,162,355Contributions, gifts, grants $2,329,477
Second Highest Funding Source & Dollar AmountGovernment Grants - Federal $101,487Government Grants - Federal $181,582Government Grants - Federal $219,997
Third Highest Funding Source & Dollar AmountAnnual Conference $65,220Annual Conference $66,855Fundraising $63,204
CEO/Executive Director Compensation $175,001 - $200,000
Tax Credits No
Short Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities43.7829.4725.00
Long Term Solvency
Fiscal Year201620152014
Long-Term Liabilities/Total Assets0%0%0%
Financials Comments
Financial Comments by Organization

These figures reflect those of TMA.

 The SW FL KIT support group does not operate as a 501c3, since we are a group under TMA but not included in its finances; we operate separately. As such, the KIT budget reflects an anticipated annual revenue stream of approximately $2,400 and expenses of $2,100. This reflects the basic meeting activities of room rental, meals and incidentals.

The challenges faced by our KIT are reflected in two areas. The first is that as the group is growing (meeting attendance has been steadily growing from about 30 to 45 each quarter). This has necessitated moving to a new meeting venue that thankfully has not increased our costs. . The second challenge is that as our members become more involved in the medical technicalities of their disease, they have requested meeting presenters with ever-increasing credentials. These presenters have increased our annual expenses by as much as $1,000 each. Because of the generosity of the Patterson Foundation and the opportunity to participate in the 2016 Giving Challenge, the KIT has been able to cover these speakers' costs. Our current meeting registration rate is $15 per person or $25 per couple and anyone unable to pay is granted a 'scholarship' rate of zero.

In addition to the every-day operating budget of the KIT, our hope is to expand support of members by offering to help with one large and potentially life-changing opportunity and that is to attend TMA's annual patient conference. For each couple (assuming a patient and caregiver) attending, the cost is generally about $2,200 (conference registration, hotel and transportation). TMA provides 12-15 scholarships each year but within our KIT there are at least 30 patients who would benefit from attending but have not qualified for the financial aid. We would like to fund additional members' attendance. The result would be those members substantially increasing their knowledge and acceptance, even comfort with their disease. 
Financial Comments by Foundation Financial information taken from Federal 990 and audited financial statements.  Contributions include foundation and corporate support as they are not separately stated on the Federal tax return or in the financial statements.
Nonprofit The Myositis Association dba SW FL Myositis KIT
Address 1940 Duke Street
Ste 200
Alexandria, VA 34209
Phone 703 553-2631