The Myositis Association dba SW FL Myositis KIT
1737 King Street
Ste 600
Alexandria VA 22314


Mission
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. 
Leadership
CEO/Executive Director Robert Goldberg
Board Chair Mr. Terry Anderson
Board Chair Affiliation Retired military
General Info
Organization DBA
DBA
0
0
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 2017
State Registration Yes 0
Financial Summary
 
 
Projected Revenue $1,424,619.00
Projected Expenses $1,079,411.00
IRS Letter of Determination
IRS Letter of Determination (group)View
Other Documents
Juvenile MyositisView
PolymyositisView
DermatomyositisView
Myositis SW Florida ChapterView
History of the SW Florida Myositis ChapterView
Myositis NewsletterView
Impact Statement

Accomplishments:

TMA provided $747,000 in grants to researchers delving into causes, treatment and an eventual cure for myositis. TMA conducted their annual patient conference in Orlando with almost 400 attendees. TMA's Medical Advisory Board held four small conferences in other areas of the country, and met with 10 local support groups.

Goals In 2016:

In the local arena, the SW FL KIT group will establish an annual Myositis Awareness event to raise local awareness. It will also increase its membership participation by 10%, in meeting attendance and by 15% using other means, including e-mail and other media to inform the local community including doctors, about the patient benefits in belonging to our support group. The KIT will recruit members and friends to help spread the word. KIT members will be encouraged to develop the skills needed to conduct home visits to members who are home or bed-bound.
Needs Statement
  1. The SW FL KIT has at least 50 members unable to attend our quarterly meetings in Sarasota. They are bed-bound, unable to drive or fearful of being in a setting with other patients. Yet these people steadfastly insist upon remaining on our e-mail list as a means of keeping in touch. We have no meeting place that enables us to include these people in a ‘virtual’ KIT to link them electronically to our live meetings. It would benefit these home-bound people if we could develop and deliver an electronic meeting to them. To deliver this ability would cost $5,000.

  2. 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 donate $10,000 to the Research fund of TMA.  

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 plenty of cards, e-mail and phone calls let 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 at TMA’s annual conference in Orlando FL, the statement was made that there are no support groups in Florida. Two Floridian attendees met later over coffee and our KIT was born. The first meeting attracted only three patients but in the eight 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 $64,000 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
Area
International
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 Sarasota and Bradenton, FL. We also maintain contact with other KITs in order to share 'best practices' and become even better at what we are already doing so well!

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

Shortly after I retired, myositis and TMA became a significant part of my life. My wife Bitsy and I had planned an active retirement. We bought bicycles and were about to get kayaks when strange things began to happen. Tripping, weakness, and balance issues began creeping into Bitsy’s life. We began visiting various doctors trying to determine the cause. Due to the rarity of myositis it took many months to confirm her diagnosis of Inclusion Body Myositis.  Today our active lifestyle reflects an intense focus on her disease. And much of this, through our involvement with TMA and our support group, centers on efforts to increase awareness, understanding, and fundraising – all in a search for a cure. 

My involvement with TMA began with our support group’s annual 5K fundraiser. There, TMA’s Executive Director and I began talking. He asked me to consider joining the board of directors – which I was happy to do. I am extremely proud to be a member of TMA’s board and this year, am its Chair.

It is not by accident that the first tenet of TMA’s Mission Statement is “To support myositis patients and their families”. As a non-profit organization, we have other objectives that often involve fundraising, primarily to target research into causes, diagnosis and treatment of our disease. However, our primary focus is and has been, helping individuals like Bitsy and me to cope with this devastating, incurable, often untreatable disease.

In the years between TMA’s formation in 1993 and 2014, we have directed over $4 million in grant money to researchers specializing in myositis research. There has been progress but for those of us living with myositis, it seemed slow and short on tangible results. In 2015, TMA was blessed to receive several bequests that increased our annual research grant money from our usual $250,000 to almost $750,000. This enabled us to provide more encouragement to researchers. As a result there has been a substantial increase in development of new medications and trials to measure their effectiveness. It’s not hard to see the correlation between money provided and the results or pending results posted.

Bequests are a difficult topic to address. While many who suffer from rare diseases are aware of the potentially powerful impact of providing for a charity in their estate plan, they find it difficult to actually ‘sign up’. Patients and their families have a real concern about their ability to provide health care for themselves. They think there will always be time to address this issue later.

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’.

Programs
Description The annual TMA conference enables these patients and their companions/caregivers have a unique opportunity to be immersed in learning about their disease and how to cope with it.
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 2015, a young woman attended her first conference with her father who has IBM. During the conference, her dad met one of the vendors who was demonstrating and selling a new device to enable IBM patients much greater use of their arms. Before the conference, this dad could only move his fingers to push the ‘joystick’ on his motorized wheelchair. After due consideration, he bought the device, strapped it to his arm and told everyone he’d now be able to lift a cup to drink his morning coffee. But then, he turned to his daughter, told her to come close and he lifted his “new” arm into a hug around her shoulders. She began crying and finally was able to say that this was the first hug she’d had from her dad in over five years.  Conference attendees often say they can’t wait to return next year. It’s no wonder!

Comments
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 and we certainly have been told that asking for someone to be with us can be a sign of weakness.

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 grasp some understanding of 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. We feel alone and inside, that scares the dickens out of us!
 
Then we found our KIT support group. We use 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.
 
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 goldberg@myositis.org
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
NameTerm
Ms. Nancy Armentrout Jan 1998 - Aug
Senior Staff
NameTitle
Staff & Volunteer Statistics
Full Time Staff 2
Part Time Staff 1
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
Collaborations

TMA is a member of AARD (The 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.

Affiliations
AffiliationYear
National Organization for Rare Disorders - Member2000
Better Business Bureau Wise Giving Alliance - Organization2000
External Assessments and Accreditations
Assessment/AccreditationYear
Charity Navigator2015
Awards & Recognition
Award/RecognitionOrganizationYear
Meets Standards of ExcellenceNational Health Council2015
Risk Management Provisions
Government Licenses
Organization Licensed by the Government No
Plans
Fundraising Plan No
Communication Plan No
Strategic Plan No
Strategic Plan Years 3
Strategic Plan Adopted Jan 2016
Management Succession Plan No
Continuity of Operations Plan No
Policies
Nondiscrimination Policy Yes
Whistle Blower Policy No
Document Destruction Policy No
Directors and Officers Insurance Policy No
Policies and Procedures Under Development
Comments
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 3.5 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 professor" 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. 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.
 

Multi-Media Comments by Organization


 
 
 
 
Board Chair
Board Chair Mr. Terry Anderson
Company Affiliation Retired military
Board Term Jan 2016 to Dec 2016
Board Chair Email terryander@verizon.net
Board Members
Board Members
NameAffiliation
Mr Terry Anderson Retired
Dr. Dana Ascherman University of Miami
Mrs. Doreen Cahoon Retired
Mr. Augie DeAugustinis Retired
Mr. Christopher Dotur Retired Military
Ms. Carol Hatfield Retired
Dr. Renee Lantner Physician
Dr. Marvin Lauwasser Retired Physician
Mr. John McClun Retired
Ms. Theresa Morris MPAS, PA-CSelf-employed
Mr. William Prall Self-employed
Mrs. Carla Stevenson Retired
Mr. John Suttle Attorney
Mr. Patrick Zenner Retired
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 14
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Gender
Male 9
Female 5
Unspecified 0
Governance
Board Term Lengths 2
Board Term Limits 2
Board Orientation Yes
Number of Full Board Meetings Annually 4
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
Finance
Program / Program Planning
Executive
Scientific Advisory
Comments
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.

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. 
Fiscal Year Projections
Fiscal Year Begins 2016
Fiscal Year Ends 2016
Projected Revenue $1,424,619.00
Projected Expenses $1,079,411.00
Organization has Endowment Yes
Endowment Value $1,000.00
Capital Campaign
Currently In a Capital Campaign No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
IRS Form 990s
9902014
9902013
9902012
Audit/Financial Documents
Audit2014
Audit2013
Audit2012
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
$0$815,286$681,721
Government Contributions$219,997$181,133$176,917
Federal$219,997----
State$0----
Local$0----
Unspecified$0$181,133$176,917
Individual Contributions$2,329,477----
$3,175$0$0
$72,123$68,613$61,588
Investment Income, Net of Losses$89,145$4,569$3,052
Membership Dues$0$0$0
Special Events$63,204$262,425$36,366
Revenue In-Kind$251,682$152,029$161,908
Other$0$4,399$374
Expense Allocation
Fiscal Year201420132012
Program Expense$1,047,891$717,741$556,012
Administration Expense$173,730$199,731$191,755
Fundraising Expense$115,814$164,681$167,486
Payments to Affiliates$0----
Total Revenue/Total Expenses2.021.211.28
Program Expense/Total Expenses78%66%61%
Fundraising Expense/Contributed Revenue4%13%19%
Assets and Liabilities
Fiscal Year201420132012
Total Assets$2,600,936$1,292,666$1,067,934
Current Assets$2,586,841$815,539$698,114
Long-Term Liabilities$0$127,788$129,710
Current Liabilities$103,475$26,908$23,714
Total Net Assets$2,497,461$1,137,970$914,510
Top Funding Sources
Fiscal Year201420132012
Top Funding Source & Dollar AmountContributions, gifts, grants $2,329,477 -- --
Second Highest Funding Source & Dollar AmountGovernment Grants - Federal $219,997 -- --
Third Highest Funding Source & Dollar AmountFundraising $63,204 -- --
CEO/Executive Director Compensation $175,001 - $200,000
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201420132012
Current Ratio: Current Assets/Current Liabilities25.0030.3129.44
Long Term Solvency
Fiscal Year201420132012
Long-Term Liabilities/Total Assets0%10%12%
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 is steadily growing from about 30 to 45 each quarter). This will eventually necessitate moving to a new meeting venue that will likely increase expenses by up to $1,000 per year. The second challenge is that as our members become more involved in the medical technicalities of their disease, they want meeting presenters with ever-increasing credentials. These presenters will also increase our annual expenses by as much as $1,000. Increases have been funded in recent years by addition of raffles and other activities that bring in up to $150 per meeting. These will not be able to cover our expenses in the long term. 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 1737 King Street
Ste 600
Alexandria, VA 34209
Phone 703 299-4850

THE COMMUNITY FOUNDATION OF SARASOTA COUNTY, INC. IS A REGISTERED 501(C)(3) NON-PROFIT CORPORATION. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP-FLA) OR FROM THE WEBSITE: WWW.FRESHFROMFLORIDA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. ONE HUNDRED PERCENT (100%) OF EACH CONTRIBUTION IS RECEIVED BY THE COMMUNITY FOUNDATION OF SARASOTA COUNTY. REGISTRATION #SC-02471.