Patient Experience with Pyridostigmine

Posted by myasthenia

In January 2022, an Illinois-based specialty pharmaceutical company collaborated on a project with Conquer MG to gain insights from MG patients. Conquer MG helped with study review and recruitment, and a study of 102 MG patients was conducted that addressed their use of pyridostigmine (brand name Mestinon®). Pyridostigmine is typically the first drug MG patients are prescribed. With permission from the specialty pharmaceutical company, we share the following data. This information may be shared, but not reprinted. If Conquer MG members have particular interest in this subject and wish to be connected with the company, email info@myastheniagravis.org and we will make a connection.

Overview

Overall, most of the respondents (81%) reported being “somewhat” to “very” satisfied with the effectiveness of pyridostigmine. However, nearly two-thirds (62%) reported some impact with the drug’s side effects, with 43% reporting at least one “severe” side effect (most often diarrhea/constipation at 25%). Many have had to limit their pyridostigmine dose or have found their quality of life diminished due to the medication.

Those who have mild to moderate symptoms are more likely to be satisfied with the drug’s effectiveness and find the side effects acceptable.

About the respondents

  • Nearly all respondents reported their MG sub-type; 85% said they have generalized MG, and 15% reported having ocular MG.
  • All have experience with taking pyridostigmine (77% reported current use).
  • Within the study group, about 80% of the study group describe MG’s daily impact as “mild” or “moderate.” Eleven percent (11%) reported experiencing a hospitalization for MG in the last 12 months.

Pyridostigmine use

As this bar chart shows, 81% of the group use pyridostigmine daily or intermittently. The average daily does is 3x per day. The most typical dose is one tablet (60 mg). Nearly a quarter (23%) limit or have stopped using the medication because of side effects they experience.

 

Satisfaction with the medicine

Study participants were asked how satisfied they are with the effectiveness of pyridostigmine, and about the side effects they encounter. The following bar charts show:

  • 23% reported dissatisfaction with pyridostigmine side effects.
  • 81% were somewhat to very satisfied with the effectiveness of pyridostigmine
  • 43% of responders reported at least one “severe” side effect (diarrhea/constipation at 25%)
  • 62% reported “some impact” of pyridostigmine side effects
  • About 60% of patients take pyridostigmine with food to minimize side effects
  • Almost half of responders vary pyridostigmine timing based on activities

When asked about the impact of pyridostigmine side effects on daily life, 62% of responders reported some impact. Over one third (35%) reported their activities of daily life (ADL) have been limited, and 30% reported a decrease in quality of life.

Deciding on MG Medications

Side effects are important to MG patients, but so is cost. Among the respondents, 5 out of 6 (83%) chose insurance coverage as an extremely important feature of MG medication. The next most important factors – for 5 of 8 (62% to 65%) – are acceptable side effects, acceptable out-of-pocket costs, and minimal drug interactions.

 

 

10th Annual Viking Challenge Recap

Posted by myasthenia

Viking Challenge for MG 2022

Walkers queue up to start the 10th Annual Viking Challenge for MG

Walkers, volunteers, and sponsor reps – 110 in all – gathered on June 19, 2022, in Elmhurst, Illinois, to kick off the 10th Annual Viking Challenge for Myasthenia Gravis. It was the first in-person event for this group in two years, and each person was prepared to rally in support of those who struggle with the rare autoimmune disease called “MG” for short.

The event netted $43,000 for Conquer Myasthenia Gravis. These funds will help the nonprofit organization provide programs of support, education, awareness, and research funding for MG patients.

10th Annual Walk, 50th Anniversary

Those attending had plenty to celebrate. This year’s Challenge marked Conquer MG’s 10th annual Chicago-area walk to lift up individuals who have myasthenia. Also, Conquer MG is celebrating its 50th year of serving the MG community. Dads got a shout-out, too, for a little Father’s Day fun.

Conquer MG Board President Bob Rosecrans opened the event, noting, “We began in 1972, when “The Godfather” was in movie theaters.” Executive Director Joan Wincentsen added, “Around that time, in 1970, scientists had just figured out a connection between MG and a specific antibody. They were beginning to understand MG as an autoimmune disease.”

Rosecrans explained, “Many of us have had our health affected by MG – or seen a family member stricken. We walk to promote awareness, support our loved ones, and to support others who have this difficult disease.”

Named the “Viking Challenge for MG,” the event inspires those affected to “act like warriors to conquer myasthenia.” This year’s event honored the memory of Tracy Shackelford, who passed away suddenly in August 2021. Tracy was active on the Conquer MG Board, and was dedicated to supporting the MG community.

Myasthenia gravis is a rare condition which disrupts how nerves communicate with muscles, causing fluctuating muscle weakness that is sometimes severe. It can affect the muscles that control eye movements, eyelids, chewing, swallowing, breathing, coughing and facial expression, as well as the arms and legs.

Some Opted for Virtual

An additional 37 individuals participated in the Viking Challenge for MG virtually. They had the option to participate where they wanted, and when they wanted between June 4-17. Most (18 of the 37) opted to walk, but some mixed it up by walking, running, and biking. One person even racked up miles by paddling. At the top of the leaderboard, Mike Shackelford on Tracy’s Legacy Team biked/walked nearly 200 miles. Jean Fee (on the team Dessie’s Dad) and David Snyder (Team Lisa Griffin 2022) placed 2nd and 3rd with 105 and 100 miles respectively.

 

Awards Announced

Hoffmann Receives Tracy Shackelford MG Service Award

From center: Mary Kay Hoffman (in navy jacket), Joan Wincentsen, Bob Rosecrans

 

After participants completed the three mile walk around Berens Park, Rosecrans presented Conquer MG’s first-ever Tracy Shackelford MG Service Award to Mary Kay Hoffmann of Glenview.

Up until the pandemic Mary Kay led the Chicago North Suburban MG Support Group. In nominating Mary Kay, a group member explained, ” She made meetings informative, accessible, comfortable, and fun. She encouraged each of us on a path to be successful in our health goals, and always was available to answer questions. Mary Kay continues to go the extra mile to reach out and keep MG patients connected. She is sympathetic but is also able to help individuals to see a more positive direction, especially if someone was having a particularly rough patch.”

Like its inspiration, the Tracy Shackelford MG Service Award recognizes an individual who advocates for others in the MG community with persistence, compassion, and care.

Wincentsen Recognized with “Above and Beyond” Award

L to R: Bob Rosecrans, Joan Wincentsen, Tammy Carter

In a surprise move, the Conquer MG Board elected to announce a second service award. Board Secretary Tammy Carter presented long-time Executive Director Joan Wincentsen with the Above and Beyond Award, “for always exceeding expectations, always reaching above and beyond in the service of individuals who have myasthenia.” Carter and Rosecrans lauded Wincentsen’s commitment to those who have this rare disease, citing her work with individuals, wellness initiatives, and MGNet – through which the organization funds cutting edge research.

Wincentsen thanked Rosecrans and Carter, adding  “I never thought my own illness would lead to meaningful and interesting work! I feel deeply for others dealing with chronic illness like MG. The fears you have about health and relationships and your personal value…well, it can be very challenging. I’m grateful to have the support of a hard-working, collaborative Board.

More Prizes

These people also were recognized for their contributions:

  • In Person – Most Funds Raised: Sara Hasemeyer ($5,811)
  • In Person – Most Spirit/Best Viking: Victor Yipp
  • Virtual –  Most Miles: Mike Shackelford, member of Tracy’s Legacy Team (198.7 miles)
  • Virtual – Most Funds Raised: Madison Shackelford ($1,555)
    • Sara Hasemeyer celebrates her fundraising success

    Victor Yipp shows off Most Spirit/Best Viking award as wife Iris enjoys his moment

     

More photos from the walk

Conquer MG celebrates 50 years serving the MG Community

Posted by Idea Marketing

Conquer MG is proud to have served the MG community since 1972! Thanks, MG advocate SeAndrea Ferguson, for creating this video that reflects our joy at turning 50.

This organization has hit many milestones in the past 50 years!

YEARMILESTONE
1972 Myasthenia Gravis Foundation of IllinoisThe organization incorporates as the Greater Chicago Area Chapter, Myasthenia Gravis Foundation, Inc.
200 people attend the first public meeting of MG patients and neurologists at Chicago’s Standard Club.
1973Our Medical Advisory Board is established to provide medical resources and respond to member questions.
In addition to funding our own initiatives, MGFI began paying dues to and supporting the national Myasthenia Gravis Foundation of America.
Over the years, our organization has operated both as an affiliate of MGFA and as an independent (as we are now).
MG Newsletter “Conquer”, established, to be sent to members on a quarterly basis
Fellowships established for education/research in MG
1974Patient Handbook published and distributed to members
1973 – 2012
fundraisers		1975: Theater party fundraiser at Drury Lane production of “My Three Angels”, starring Chuck Connors. 865 tickets sold, resulting in a net profit of nearly $9,000.

Looking back at other fundraisers is a nostalgic walk through the past:
1975: Theater benefit at Drury Lane North, with a play staring Nanette Fabray, raised  $5,000
1977: Dinner-theater benefit at Drury Lane South, play starring Mickey Rooney, raised $6,200
1979-1980: Lunch/fashion show in Bensenville, Illinois, raised $2,000
1983: Charity Bazaar/Garage Sale raised $800
1985: Chuck Mangione concert fundraiser raised nearly $2,000
1985-1986: Raffle books, Entertainment book fundraisers netted $5-$6,000
1994: Calendar Club fundraiser established
1996-1997: Maywood Park “Night at the Races” raised $5,600.
2009-2012: Strike Out MG fundraisers at Kane County Cougars and Schaumburg Flyers games raised $2000
2016: Bocce Ball party, Oak Brook
2017-18-19: Trivia Nights with Jim White at the American Legion, each raising $2,500

1976A medical consultation program on MG was shown in February  on Chicago TV channels 7 and 11
Library of tapes on the subject of MG established
Spring membership drive added 100 new members
1977Jean Kempton, author of the book, “Living with Myasthenia Gravis,” gave a presentation at the September meeting.
City of Chicago Mayor Michael Bilandic proclaimed for the first time a “Myasthenia Week” for the city.
1978Governor Jim Thompson declared for the first time an “MG Week” for the State of Illinois.
1981Annual Conquer award established to honor an individual for service to the organization
198210th Anniversary celebration of establishment of Myasthenia Foundation of Greater Chicago, Il.
1983MG office moved to Addison, Ill.
1984Beth Shaffer hired as first Executive Director.
$5,500 received from Frances Beidler Charitable Trust
1987Executive Director Leah M. Kranz hired
1988MG survey sent to 650 members.. Results show countless numbers of positive comments.
1991501(c)(3) rating to operate as an organization separate from the national organization was received from IRS.
$1,000 grant made for purchase of a synthesizer to research the molecular biology of Myasthenia.
20th anniversary of organization celebrated on the Odessey Cruise ship on Sept. 20.
1995Organization name changed from Myasthenia Gravis Foundation, Chicago Chapter, to Myasthenia Gravis Foundation of Illinois.
Joyce Holste elected to Board.
1996New area group established in Winfield. and Elmwood Park
199725th Anniversary celebration at Maywood Park “Night at the Races” raised $5,600.
$40,000 anonymous donation received
A 55 minute interview on MG was presented on Chicago Bear radio. Joyce Holste, Helen DeWitt, and Dr. Scott Heller were interviewed
1998 Dr. Wayne Rubenstein volunteered to produce a web page for the organization
1999$10,000 grant given to Rush-St. Luke’s for research on Cellcept
myastheniagravis.org website is launched.
2000PSA project undertaken to spread knowledge of MG throughout the Chicago area. Radio, TV, print media, Oprah and Jenny Jones are contacted.
Congressional campaign started to investigate the shortage of certain MG drugs
2002 30th anniversary Chicago cruise night
2004 A Nurses Advisory Board was activated. It will provide outreach educational program about MG for community nurses.
2006MGFI supported national MGFA annual conference held in Chicago
Support groups in South Suburbs and Quad Cities were restarted
Office moved to Elmhurst, Illinois
Kimberly LaBounty becomes Executive Director
$50,000 anonymous donation given to MGFI
2007The organization offers 7-8 in-person support groups throughout Illinois and NW Indiana
Annual meetings hosted in the Chicago area provide education to MG patients
The Myasthenia Gravis Foundation of Illinois on YouTubeFirst video posted to MGFI’s YouTube Channel
Joan Wincentsen becomes member of Board of Trustees
Board member Peggy Cashman publishes “The Mystery Guest, MG”
2009-2010-2011Attacking MG  Walk-Run-Swim hosted in Springfield, Illinois, by Kaitlyn Jasmon to benefit MGFI
2010 Started Pilot Grant program to promote early development of new ideas, collection of preliminary data; from 2010-2021 have funded 13 studies, $900,000
2012Adopted the vision statement “Eliminate Myasthenia Gravis” and the Values Statement “We work to achieve our mission and vision through our organization, values of care, hope, inspiration, awareness and advocacy.”
2012Held “MG Across Generations” panel discussion in Bloomington/Normal
201240th Anniversary – Drury Lane brunch with Second City troop and raffle; Lisa Guerrero wins Inspiration Contest
2012 Bences Maravilla begins raising MG awareness in Chicago-area Latin communities – walking in Aurora’s 4th of July parade &Puerto Rican Festival Parade, Fox Valley United Way Cardboard Boat Race, Latin Health Fairs, when visiting soccer and baseball teams in California and beyond
2013 Myasthenia Gravis Foundation Gift StoreHosted 1st annual  Strides Against MG Walk to raise MG awareness and funds
2013

Joan Wincentsen becomes Executive Director
2014

Joined AARDA – now Autoimmune Association to be our eyes on Washington/legislation; have signed many letters advocating improved access to treatments for rare disease, promoting development of treatments
2014Started the Patient Assistance Program for MG patients in need in Illinois, Indiana, and Wisconsin; have fulfilled 150 requests for support with $100,000
2016 Renamed the organization Conquer Myasthenia Gravis (Conquer MG for short)
2020Walk becomes Viking Run/Walk
2019 Joined MGNet to fund MG research with NIH and MGFA; consortium of academia, pharma and patient advocacy groups; enables us to fund innovative MG research worldwide, and have direct access to the MG research community
2014 – 2017 – 2020 Exercise fitness and treatments with MGConquer MG presents innovative content on exercise for MG patients, emphasizing wellness and self-care
2021 Conquer MG presents innovative content on diet for MG patients, with wellness focus
2019Conquer MG begins working with pharma in their quest to deliver MG treatments
2020-2022Conquer MG shares its Medical Advisory Board’s COVID guidance through its newsletter, website and email updates
2020In-person support groups suspended to protect MG patients. Webinars are offered in place of in-person educational events.
2021 Walk goes virtual, becomes the Viking Challenge for MG. The Anywhere MG virtual monthly support group is started. Five webinars provide education for hundreds of MG patients.
2021 Conquer MG imagines a “World Without MG,” inviting the MG Community to draw their vision of hope on a virtual whiteboard. Following the sudden passing of Board member Tracy Shackelford, the next year’s walk is dedicated to her memory.
2022 50th Anniversary celebrated, 10th annual Walk/Run takes place -virtually and in-person. 1st Tracy Shackelford MG Service Award is presented to support group leader Mary Kay Hoffmann. Executive Director Joan Wincentsen is presented with the Above and Beyond Award. Several support groups experiment with in-person meetings.