Myasthenia Gravis Association of Kansas City
2340 E. Meyer Blvd.
Building 1, Suite 300A
Kansas City MO 64132
MGA ANNUAL MEETING
Web and Phone Contact
Telephone (816) 2564100
Mission Statement
The Myasthenia Gravis Association is dedicated to improving the quality of life for those affected by this autoimmune, neuromuscular disease, through awareness, education and patient services.
Leadership
CEO/Executive Director Ms. Allison Foss
Board Chair Mr. Brett Henson
Board Chair Company Affiliation Kalo
History and Background
Year of Incorporation 1961
Volunteer Opportunities
Ways to donate, support, or volunteer
In an effort to avoid credit card costs, the MGA would appreciate donations made in the form of checks, however donations can be made through our website, by clicking on DONATE NOW or by designating the Myasthenia Gravis Association Serving KS & MO through "Network For Good" or "First Giving".
 
If your interested in offering volunteer services, please contact the MGA office at info@mgakc.org or (816) 256-4100 to discuss options with our Executive Director.
Financial Summary
Revenue Expense Area Graph

Comparing revenue to expenses shows how the organizations finances fluctuate over time.

Source: IRS Form 990

 Breakdown
Net Gain/Loss:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.
Statements
Mission Statement The Myasthenia Gravis Association is dedicated to improving the quality of life for those affected by this autoimmune, neuromuscular disease, through awareness, education and patient services.
Background Statement The Myasthenia Gravis Association was founded in 1960 by Joan Stackhouse, who was diagnosed with MG and found that little information and support existed to help her and others. Over the years, MGA has collaborated with Menorah Medical Center, Research Medical Center, Kansas City Clinical Neurological Associates of St. Lukes Medical Centers.  MGA works with many neurologists in the Kansas City area, including our specialized MG clinics at KU Medical Center and two locations of Dr. Schwartzman's at Neurological Consultants. Besides clinic support for members and their families, 8 support groups in Missouri, Kansas and NW Arkansas and telephone contact provides support and information. Quarterly newsletters, "New Patient Packets" and an annual meeting provide news of research, treatment, medications and other health-related information. Community presentations, health professional training and participation at health fairs provides opportunities for public education and awareness. With changing demographics and younger interests in online information, the MGA has identified ways to update our marketing materials and utilize the web and social media.
Impact Statement

2018 ACCOMPLISHMENTS:

  1. We connected with 84 new patients.
  2. We created and supplied 4 issues of the of CONNECTIONS newsletter to a mailing list of 1,540
  3. We saw 335 patients at 62 clinics.
  4. We held 37 MG Support Groups with over 632 participants in 8 cities.
  5. We had 460 participants and over 120 volunteers at the 8th Annual MGA Triple Crown Showdown 5K run, walk & tot trot and raised $51,000.
  6. Held a successful annual meeting with 82 attendees.
  7. Expanded our Facebook page presence to over 7,000 likes
 
2018 GOALS: 
  1. REVENUE: We must find a new way to bring in more funding through the Annual Benefit or another route due to increasing costs.
  2. WEBSITE: Continue updates on our website.
  3. EXPANDING THE MANHATTAN AND COLUMBIA REGION: We intend to get support groups going in these areas.
  4. AWARENESS: Create awareness among a much needed group of health professionals. Have the cities across Missouri and Kansas sign a proclamation that June is MG Awareness Month.
  5. VA CLINIC: The VA opened a MG clinic in 2014 so in 2018 we will continue to try to reach out to them to participate in the clinic.
Needs Statement
  1. Attract corporate sponsors to underwrite costs associated with Annual Benefit & Annual Meeting, ($10,000).
  2. Increase public awareness & public relations by updating marketing materials ($3,000)
  3. Update database to be more user friendly for staff and provide more efficiency for patient needs and those served. (5,000)
  4. Expand to Topeka/Manhattan area and serve patients in surrounding communities. ($2000)
  5. Strengthen relationships with neurologists in service area to share patient resources through clinics and support groups.
Service Categories
Centers to Support the Independence of Specific Populations
Neurology & Neuroscience
Neurology & Neuroscience
Areas of Service
MO
KS
AR
CEO/Executive Director/Board Chair Statement

The Board of Directors is dedicated to move the association forward and is gratified to have an executive director who not only is a patient who has battled myasthenia gravis since she was a child but also a former Board Member. We are aggressively recruiting additional board members with skill and talent in civic, cultural, and business venues. The MGA annual benefit/auction and MGA's Triple Crown Showdown 5K Run/Walk, Mile Mosey and Tot Trot are currently the association’s major fundraisers and the staff and Board members were successful in reaching out to corporations beyond those who have historically sponsored and contributed to this event. The momentum is strong and the board believes the MGA has provided an increased level of service and communication to those individuals and their families living with myasthenia gravis in greater Missouri, Kansas and NW Arkansas.

Programs
Description

The MGA has two MG Clinics (St. Lukes and KUMC) that they work with through a collaborative effort with local neurologists who specialize in the treatment of MG. Physician offices make an effort to schedule MG patients the same day of the week so that MGA staff and volunteers can meet with patients/clients in the physician’s office before their appointment. A new diagnosis or coping with a chronic disease, such as MG, can cause anxiety and fear. Meeting with a MGA staff member or volunteer offers an informal, friendly and less medical opportunity for sharing and learning. The purpose of the clinics is:

 

  • Provide support to MG clients and referrals to human services
  • Provide “New Member Packets” for newly diagnosed members
  • Provide opportunities to discuss coping with symptoms
  • Provide opportunities to discuss wellness techniques & healthy lifestyle
  • Provide informational material regarding links to MG and other health-related resources

 

Program Budget $5,100.00
Category Diseases, Disorders & Medical Disciplines, General/Other Nervous System Diseases
Population Served Adults
Short-Term Success The MGA does not have control over the rate of remission or wellness of our members. To us, success is measured in numbers served.

We held 47 clinics at KU Medical Center, seeing 112 unduplicated clients. At Dr. Schwartzman's Neurological Consultants at St. Luke’s Medical Center locations, we held 17 clinics, seeing 87 unduplicated clients. Mainly due to these clinics, we are serving over 82% of clients with MG in the KC metro area.

Despite any personal inconvenience, our individualized service to each member promotes clients to schedule appointments during our "clinic" times. Members are eager to discuss their MG, their symptoms, medication side effects and discouragement with fatigue, vision problems and how their chronic disease has impacted personal/family life. Seldom do patients receive this kind of personalized attention within a doctor's office setting.
Long-Term Success As a result of knowledge gained, opportunity to freely discuss MG, symptoms and opportunity for dialogue focused on coping with chronic disease, MG clients will live as independently as possible and with the dignity of self-sufficiency.
Program Success Monitored By Because MG clients go in and out of remission and because treatment plans vary, physician appointments are not predictable or consistent and we do not always see the same clients on a regular basis. However, we listen to clients we see and respond to requests or suggestions for information. Consequently, we research and print requested handout materials to distribute at clinics and include in “New Member Packets”. Because a medical appointment can potentially produce anxiety, clients welcome our accommodating presence and non-medical supplement to their visit.
Examples of Program Success
  1. Frequently expressed gratitude for a non-medical supportive person who is knowledgeable about MG 
  2. Clients express gratitude for MG handout materials. 
  3. Clients call us with follow-up questions, to further discuss their condition or to tell us they are in the hospital.
Description Regularly scheduled support group meetings allow those living with MG and their families a resource to better understand and cope with MG. Support Group meetings are held in Kansas City, Columbia, Wichita, Springfield, NW Arkansas, St. Louis and the KC Northland and include a guest speaker and the opportunity for informal sharing of information, time for socialization and refreshments.  In addition, a Young Persons with MG Group meets in Kansas City.
Program Budget $42,000.00
Category Diseases, Disorders & Medical Disciplines, General/Other Nervous System Diseases
Population Served Adults
Program is linked to organization's mssion Yes
Program Frequently Assessed Yes
Short-Term Success Because we have no control over the rate of remission or wellness of our clients, success is measured in numbers served. In 2018, 632 clients, caregivers, family members and friends attended 37 support groups. Evaluations showed that there was general appreciation for information, question & answer period about MG and open sharing regarding members coping with MG. Trust is apparent when attendees are willing to exchange phone numbers for MG telephone reassurance. Over 95% rate our support groups as “excellent” in regards to the speaker, presentation, being able to better manage their life, increasing their knowledge, making connections with others, and living independently. In 2018, we served  near 90% of those with MG in the KC Metro area.
Long-Term Success As a result of knowledge gained, sense of camaraderie, exchange of client coping strategies and sharing of telephone numbers for support, MG members will live as independently as possible and with the dignity of self-sufficiency.
Program Success Monitored By

The two MG Clinics, Support Groups and the Annual Meeting utilize questionnaires targeted to function, topics and satisfaction with guest speakers. Individualized Education utilizes scripted verbal or email questioning. For all, we ask questions related to “Was this information useful in coping with your MG or as a caregiver?” and “Do you think you’ll become a better health care advocate for yourself or others?”.

Examples of Program Success
  1. Evaluations reveal beneficial presentations and information. 
  2. Clients express gratitude for opportunity to exchange information, ideas, coping skills and phone numbers. 
  3. Members call us with follow-up questions, to further discuss their condition or to tell us they are in the hospital.
Description
There are two goals for this program:
  1. Achieve public awareness through community outreach, educational activities and media relations by networking with other community agencies and the mass media arena to share information about Myasthenia Gravis and resources available through MGA.
  2. To provide continuing education for health care professionals in this region through planning and coordinating educational forums whereby introducing, enhancing and reinforcing knowledge of diagnosis methods, on-going treatment options, research activities and outcomes and patient management/care techniques for those affected by MG.
Program Budget $11,000.00
Category Diseases, Disorders & Medical Disciplines, General/Other Nervous System Diseases
Population Served Adults
Short-Term Success

Staff members, board members and volunteers speak at various events in Missouri and Kansas. In 2017, 94 MG patients, health professionals and friends of MGA attended our 58th Annual Meeting.  There were 490 participants at the MGA Triple Crown Showdown and 130 individuals attended the Cy's Crown Town Trivia Night. Both events raised awareness for myasthenia gravis.

Long-Term Success Because Myasthenia Gravis is frequently misdiagnosed or undiagnosed and because MG is a rare and relatively unknown chronic disease, bringing awareness, information and resources to health and human service professionals may lead to early diagnosis, treatment and result in remission for MG patients.
Program Success Monitored By Although evaluations are positive, it is difficult to evaluate the impact of these events. However, if one person is successfully diagnosed or receives information and support through a referral from these presentations, they are successful.
Examples of Program Success
  1. Evaluations reveal beneficial information and increased knowledge regarding MG, diagnosis, treatment and referrals. 
  2. Referrals realized: Phone calls from MG patients are generated to MGA office as a result of information gained from participants attending public awareness events. 
  3. Annual Meeting and Nurses Mini-Conference evaluations show positive feedback regarding new information gained from guest speakers.
Description
There are four goals for this program:
  1. The publication of MGA’s “Connections” quarterly Newsletter.
  2. Production and distribution of “New Member Packets”.
  3. Information and referral.
  4. The MGA quarterly newsletter, “Connections” is sent to over 1,400 members, health professionals, friends of MGA and donors by email and standard mail. In addition, our website posts current newsletters. “New Member Packets” contain over 20 pieces of literature regarding MG and other health related issues and are mailed to newly diagnosed patients or personally handed to clients at MG clinics. Through our MGA office, staff members provide information and resources regarding MG and referrals to Neurologists who specialize in MG.  Volunteer coordinators of the MG Support Groups refer participants to the MGA office for support and I & R.
  5. The MGA website and Facebook is a useful tool to conveniently link participants with information about MGA, MG, resources, video links of those living with MG and more.
Program Budget $21,300.00
Category Diseases, Disorders & Medical Disciplines, General/Other Nervous System Diseases
Population Served Adults
Short-Term Success Because we have no control over the rate of remission or wellness of our members, success is measured in numbers served. In 2017, 5,600 of our “Connections” newsletter were sent out to our members, caregivers, family members, friends and healthcare professionals. 74 MG clients received “New Member Packets”, 420 clients/caregivers received information and/or referrals through MGA office & volunteer phone calls/emails and we hosted 31 support groups with 554 attending. At each support group, evaluations are filled out. The majority of support group ratings were rated either excellent or good.
Long-Term Success As a result of information gained through the MGA newsletter, “Connections”, “New Member Packets” and information and referral provided by MGA staff, MG members will live as independently as possible and with the dignity of self-sufficiency.
Program Success Monitored By We ask MG memberss at clinics and support groups if there is information or specific articles they would like to see in the newsletter. We review the newsletter of the Myasthenia Gravis Foundation of America, (national office) and newsletters of MG associations across the country for new ideas and information. We are in contact with the MGFA to receive any new publications for inclusion in our “New Member Packets” and will include articles submitted by health professionals or MG clients. The MGA Executive Director attends local human service collation meetings and uses 2-1-1 resources to remain current in referral options for our members.
Examples of Program Success
  1. Frequently expressed gratitude for “Connections” and “New Member Packets” 
  2. Members utilize telephone reassurance numbers from other MG clients that are listed in newsletter. 
  3. Members call us with follow-up questions, to further discuss information they read in the newsletter or “New Member Packets”. 
  4. Members express gratitude for referrals to Neurologists that have become their MG physician.
CEO Comments
For 59 years, The Myasthenia Gravis Association has continually evolved as a dynamic and professional agency blending staff and volunteers to offer critical programs and services to those living with MG, their family and friends. Our Board is eager to meet the demands of a growing association.  
 
Our program CONNECTIONS, connects MG patients who are willing to share their phone number/email address with other MG patients for support.  This program provides a very personal opportunity for support.  In 2013, we developed a "Young Women's CONNECTIONS" network as well that connects specifically just women in their 20's, 30's and 40's.  In 2018, we created a Young Persons with MG group that meets in Kansas City.
 
Historically, the MGA received 50% of our revenue from the United Way, but in the last 5 years our allocation comprises much less of our budget.  We continue to look to local corporate & foundation sponsors to compensate and have created the MGA Triple Crown Showdown 5K run/walk, mile mosey & tot trot and the Wichita Walk for Awareness as additional funding streams.
 
Because MG patients are generally diagnosed later in life and because older people tend to appreciate the value of support groups, our data base is mostly comprised of an older demographic.  In an effort to reach out to a younger population, the MGA has most recently gained traction through Facebook, Twitter & Instagram means of communication.  Reaching the younger crowd is still a challenge the MGA faces.  The Young Women's CONNECTIONS, mentioned above, has been an effort to help reach younger individuals.
 
Because the MGA believes that access to health information is critical to promoting healthy people and that knowledge is indispensable in making informal decision in healthcare, all programs and services of the MGA include evaluations which ask questions related to usefulness of information and potential behavior change.  Symptoms of myasthenia gravis are not necessarily related to behavior so consequently we are not able to relate reduction in symptoms or hospitalizations to our services.
Executive Director/CEO
Executive Director Ms. Allison Foss
Term Start Dec 2017
Experience

Allison Foss joined the MGA as the Executive Director in December 2017. Allison graduated from Iowa State University with a Bachelor of Child & Family Services.  She has spent the last 18 years working with and advocating for individuals with developmental disabilities and special needs.  She comes to the MGA from Johnson County Developmental Supports where she was a Service Coordinator.  

Allison began her partnership with the MGA in 2010 when she initiated the MGA Triple Crown Showdown (formerly the MGA Walk Run and Roll).  Allison has worked as a volunteer to help spearhead the MGA Triple Crown Showdown for the last 7 years. In Allison's time as a volunteer the run has grown from just under 200 participants to just under 500 participants and raised more than $200,000.  Allison has been an active member of the MGA Board of Directors for the past two years, serving as Board President in 2017.  
Former CEOs
NameTerm
Ms. Chris AlmvigDec 2007 - Dec 2012
Ms Danielle WalkDec 2012 - Dec 2017
Senior Staff
Title Program Coordinator
Staff
Paid Full-Time Staff 1
Paid Part-Time Staff 1
Paid Contractors 0
Volunteers 150
Retention Rate 100%
Staff Diversity (Ethnicity)
Caucasian 2
Formal Evaluations
CEO Formal Evaluation Yes
CEO/Executive Formal Evaluation Frequency Annually
Senior Management Formal Evaluation Yes
Senior Management Formal Evaluation Frequency Annually
Non-Management Formal Evaluation Yes
Non-Management Formal Evaluation Frequency Annually
Plans & Policies
Organization Has a Fundraising Plan Yes
Organization Has a Strategic Plan Yes
Management Succession Plan Yes
Organization Policy and Procedures Yes
Nondiscrimination Policy Yes
Whistleblower Policy Yes
Document Destruction Policy Yes
Collaborations
  • The Epilepsy Foundation of Greater Kansas City
  • Neuromuscular Clinic at KU Medical Center
  • Neurological Associates at Saint Luke's Hospital
  • Midwest Neurological Coalition
  • Conquer MG, Elmhurst, IL
Affiliations
AffiliationYear
United Way Member Agency1960
Nonprofit Connect of Greater Kansas City2013
Nonprofit Missouri2012
TechSoup2013
Awards
Award/RecognitionOrganizationYear
Community Quarterback Volunteer Award to Lisa Sackuvich - $500National Football League2003
Community Service Award - $1,500Walmart2003
Volunteer Of The Year - Diana Wilmoth, RNMyasthenia Gravis Foundation of America2008
Government Licenses
Is your organization licensed by the government? No
CEO Comments

In an effort to solicit additional support & expertise, in 2008, MGA created a Medical Advisory Committee and have added a new neurologist and a pharmacist in 2018. We are now comprised of 14 physicians, nurses & a pharmacist who work with MG patients or who support the work of the MGA. Their support has moved our mission forward.

The Executive Director works closely with the Board by emailing Monday Board Updates and submits an Executive Director's Report at monthly Board meetings. There is an excellent working relationship between the Executive Director and part-time Program Manager which increases our ability to serve.

With such a small staff, it has been difficult to provide all of the services that we would like to throughout MO, KS & NW Arkansas. Due to this we have been utilizing volunteers and interns.

Based on our outcome measurement, our members enjoy programs that they are able to interact with others living with MG and wanted more programs and activities in other areas that we provide services and support aimed towards younger individuals living with MG. As a result, we are in our 9h year of the MGA Triple Crown Showdown (5k and 1 mile mosey) and have an MGA Snowflake Shuffle 0.1K in Wichita, KS. A “Young Women’s Connection” list was created to connect other young individuals with that seek additional support. Although we are not affiliated with the myasthenia gravis national foundation, we continue to work with affiliated or unaffiliated chapters around the country offering assistance with newsletter design and support group organization.

Board Chair
Board Chair Mr. Brett Henson
Company Affiliation Kalo
Term Jan 2018 to Dec 2020
Email bhenson@kalo.com
Board Members
NameAffiliation
Mr. Joe BantLewis, Rice, Fingerish Law Firm
Brodie Beck
Ms. LaDonna DillerSoleo Health
Mr. Derek HaverkampPeople's Bank
Mr. Brett HensonKALO
Stephanie Hubers
Mr. Ray OlsenCommunity Volunteer
Ms. Lisa Sackuvich RNARJ Infusion Services
Dr. John Sand MDMD Electrodiagnosis
Nancy Vinsant
Mr. John WilkinsonPremier Lighting and Controls
Board Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 11
Hispanic/Latino 0
Native American/American Indian 0
Board Demographics - Gender
Male 7
Female 4
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 1
Board Meeting Attendance % 60%
Written Board Selection Criteria? Yes
Written Conflict of Interest Policy? Yes
Percentage Making Monetary Contributions 100%
Percentage Making In-Kind Contributions 75%
Constituency Includes Client Representation Yes
Number of Full Board Meetings Annually 11
Advisory Board Members
NameAffiliation
Dr. Richard Barohn MDUniversity of Kansas Medical Center Dept. of Neurology
Dr. Emmanuel Daon MDKU Medical Center Thoracic Surgery
Dr. Mazen Dimachkie MDKU Medical Center Dept. of Neurology
Dr Constantine Farmakidis MD
Dr. Vernita Hairston-Mitchell MDResearch Neurology Associates - Research Medical Center
Dr. Larry Hollenbeck MDNorthland Neurological Associates
Dr. Omar Jawdat MDKU Medical Center & VA Hospital
Dr. Leonard Lausten MDKUMC - Dept. of Dentistry
Dr. Eric May MDWestport Anesthesia at St. Luke's Medical Center
Dr. Mamatha Pasnoor MDKU Medical Center Dept. of Neurology
Dr. Michael Schwartzman MDNeurological Consultants at St. Luke's Medical Center
Katelyn Steele PharmD
Ms. Diana Wilmoth RNCommunity Volunteer at Neurological Consultants
CEO Comments
Based on our outcome measurement, our members enjoy programs that they are able to interact with others living with MG and wanted more programs and activities in other areas that we provide services and support aimed towards younger individuals living with MG. As a result, we are in our 6th year of the MGA Triple Crown Showdown (5k and 1 mile mosey) and have walks in Wichita and Lawrence, KS. A “Young Women’s Connection” list was created to connect other young individuals with that seek additional support. A Young Persons with MG Group has been meeting in the Kansas City metro.  Although we are not affiliated with the myasthenia gravis national foundation, we continue to work with affiliated or unaffiliated chapters around the country offering assistance with newsletter design and support group organization.
Financials
Fiscal Year Start Jan 01, 2019
Fiscal Year End Dec 31, 2019
Projected Revenue $187,000
Projected Expenses $187,000
IRS Letter of Exemption
Foundation Comments
  • FY 2017, 2016, 2015: Financial data reported using the IRS Form 990-EZ.
  • Foundation/corporate revenue line item may include contributions from individuals.
Detailed Financials
 
Expense Allocation
Fiscal Year201720162015
Program Expense$122,377$100,686$85,252
Administration Expense$9,524$3,846$20,282
Fundraising Expense$0$0$0
Payments to Affiliates----$0
Total Revenue/Total Expenses0.961.301.01
Program Expense/Total Expenses93%96%81%
Fundraising Expense/Contributed Revenue------
Assets and Liabilities
Fiscal Year201720162015
Total Assets$206,772$210,058$179,904
Current Assets$194,574$187,758$159,463
Long-Term Liabilities$0$0$0
Current Liabilities$5,906$4,181$5,465
Total Net Assets$200,866$205,877$174,439
Short-Term Solvency
Fiscal Year201720162015
Current Ratio: Current Assets/Current Liabilities32.9544.9129.18
Long-Term Solvency
Fiscal Year201720162015
Long-Term Liabilities/Total Assets0%0%0%
Top Funding Sources
Fiscal Year201720162015
Top Funding Source & Dollar Amount $30,000Anonymous $41,608 --
Second Highest Funding Source & Dollar Amount $7,700Anonymous $10,000 --
Third Highest Funding Source & Dollar Amount $5,000Anonymous $5,750 --
Capital Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years No
Organization Comments

Each winter, we prepare our budget and financial goals for the upcoming year.  Some of those goals for 2019 are:

  • Continue to increase income from foundations, corporations, individuals and fundraising activities.
  • Seek independent grants from individuals, businesses or foundations to cover costs of printing and production of MGA brochures and newsletters.
  • Enhance our database to be more user friendly and efficient to provide patient resources and information.
  • Update our marketing materials.
  • Work to to expand supports and services in the Topeka/Manhattan area.

Most MG associations throughout the country function with volunteers only and without office space. Our board has chosen to see the big picture and the necessity to maintain structure and organization including an office and staff. With non-profit status comes our ability to seek grants from the United Way and other foundations that will help sustain staff, programming costs and links to MG and community resources.

Other Documents
Annual Report2017View
Courtney's Story - Membership Drive2016View
Spring Newsletter2016View
Annual Report2016View
Annual Report2015View
Annual Report2014View
Organization Name Myasthenia Gravis Association of Kansas City
Address 2340 E. Meyer Blvd.
Building 1, Suite 300A
Kansas City, MO 64132
Primary Phone (816) 2564100
Contact Email allisonfoss@mgakc.org
CEO/Executive Director Ms. Allison Foss
Board Chair Mr. Brett Henson
Board Chair Company Affiliation Kalo
Year of Incorporation 1961