Why We Walk: Virtual Viking Walk/Run will help fund myasthenia gravis research
Imagine waking up one day to blurred vision and drooping eyes. Or suddenly slurring your speech, or unable to chew your food and swallow. Imagine having to rest your arms in the middle of blow drying your hair.
Imagine these conditions ebbing and flowing. One day there and the next day everything is fine, only to have it start up all over again, this time even worse.
This is myasthenia gravis, which is characterized by weakness and fatigue of any of the muscles under your voluntary control. Symptoms include weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.
Though this disease can affect people of any age, it's more common in women younger than 40 and in men older than 60.
There is no cure for myasthenia gravis, but treatments can help with some of the symptoms.
Conquer MG, based in Elmhurst, is hosting its Virtual Viking Walk/Run for MG June 14-30. Cost is $35.
Joan Wincentsen, executive director of Conquer MG, talks about the organization and this fundraising event.
Q: What is myasthenia gravis? Give a brief overview of your organization.
A: Myasthenia gravis is a chronic autoimmune neuromuscular disorder that causes fluctuating muscle weakness. It can affect muscles that control eye movements, eyelids, chewing, swallowing, breathing, coughing and facial expression, as well as the arms and legs.
It affects approximately 20 per 100,000 people of any age, race or gender.
Conquer MG (formerly known as the Myasthenia Gravis Foundation of Illinois) has been serving myasthenia gravis patients since 1972 with programs of patient support, education, awareness and research funding for a cure.
Headquartered in Elmhurst, the organization assists MG patients and families nationwide, with a special emphasis on in-person seminars and support groups in Illinois and the greater Chicagoland area.
Q: Where do the majority of your donations come from?
A: Conquer MG is funded primarily by individual donors, with a small amount (less than 5%) coming from corporate partners.
Q: How many people per year do you serve?
A: Conquer MG actively serves more than 3,000 myasthenia gravis patients and family members each year.
Q: What are some of your programs?
A: To protect the health of those we serve during the pandemic, Conquer MG is offering webinars and online support group meetings, plus important resources from MG experts that address managing MG with COVID-19.
We want to help individuals make healthy life choices so they can be in the driver's seat when it comes to their own health.
In typical years, Conquer MG hosts two yearly, in-person patient education seminars, plus seven support groups in the Illinois and Chicagoland area. Conquer MG regularly shares information about clinical trials, current treatments and coping strategies via print and online newsletters, its YouTube channel, and regular blog posts on its website.
We supply local neurologists and eye physicians with MG information packets for newly diagnosed patients.
In 2019, the Conquer MG Patient Assistance Program helped more than 30 individuals with the cost of medical care. Since 2010, Conquer MG has funded significant research studies that explore MG biological mechanisms. We raise awareness through our annual walk, online Trivia Nights, and Brookfield Zoo Holiday Tree.
Q: Tell us about your virtual event. How does it work? Is there a registration fee?
A: We can't gather in person this year for Myasthenia Gravis Awareness Month, but we can still act like warriors to conquer MG. Now more than ever, it's important to put our energy into healthy practices — whether it's outside or walking around the living room.
Visit https://tinyurl.com/VirtualChallengeMG and register by June 30. The cost is $35, plus a small transaction fee. Set your own activity goal, then complete your 5K, walk your miles, climb stairs 10 minutes each day for a week, or dedicate hours to your garden.
Send a photo of your activity to info@myastheniagravis.org (deadline July 15); we'll post it on the Conquer MG Facebook event page.
Prizes will be awarded for the funniest photo, best Viking photo, and most donations raised by July 15.
Q: How can readers help if they can't participate in the event?
A: Like all nonprofits, Conquer MG needs your help to carry on its work to serve those who are struggling with myasthenia. Donations of any amount are welcome. If you're able, visit https://tinyurl.com/VirtualChallengeMG and click the yellow “Donate” button.
Q: What else would like readers to know?
A: During June, Myasthenia Gravis Awareness Month, Conquer MG strives to make the public aware of this debilitating disease. We're encouraged that a number of clinical trials are in the works, and new FDA-approved treatments are becoming available for the first time since the 1950s.
Virtual Viking Walk/Run for MG
Who: Benefits Conquer MG
When: June 14-30
Cost: $35, plus a small transaction fee
Register or to donate: Visit https://tinyurl.com/VirtualChallengeMG by June 30.
Details: Send a photo of your activity to info@myastheniagravis.org (deadline July 15); organizers will post it on the Conquer MG Facebook event page. Prizes will be awarded for the funniest photo, best Viking photo, and most donations raised by July 15.