Nominate someone for the Tracy Shackelford MG Service Award!

Nominate someone for the Tracy Shackelford MG Service Award! 

Please submit:  

  • Full name of nominee 
  • Your name if you are nominating someone other than yourself 
  • Contact phone and email address 
  • Mailing address (only individuals who live in our service area are eligible) 
  • A 500-word explanation about what this person has done. Include information about why you think it is meaningful or has a lasting impact on the MG community. 

Nominations should be sent by email to info@mystheniagravis.com.  

The deadline to submit is Wednesday, May 24.  

The winner of this award will be announced at this year’s 11th Annual Viking Challenge for MG. 

11th Annual Viking Challenge for MG – 2023

In-Person Walk – Sunday, June 4

Virtual Challenge – May 14 to June 2

LET’S CONQUER MYASTHENIA GRAVIS

Registration for the 11th Annual Viking Challenge is now open and we hope you will join us! 

Help us lift up those who struggle with this often-disabling rare autoimmune neuromuscular disease. This year marks our 11th annual walk for those with MG!

All proceeds support the mission of Conquer Myasthenia Gravis.

SIGN UP

Click the blue Sign Up button above anytime between now and June 2. Day-of registrations will be accepted at the walk.

    • Adults: $45
    • On walk day: $50
    • Youth ages 0-13: $15

You can participate in-person or virtually, join/create a team, or donate in support of the event. Team captains should register the team first, then others can choose this team when they sign up. Need to register more than one person? Just follow the prompts.

  1. Invite friends, family, neighbors and colleagues to join your team. 
  1. Fundraise and tell people why you are supporting the Viking Challenge and ask for their support. Make it personal to make it powerful.  
  1. Celebrate those living with MG on walk day, Sunday, June 4. 

Whether from home or in-person, we need you to help raise awareness, raise funds, and bring hope to those who live with this rare disease. Your participation means we can continue to fund important research to help those living with MG. To this date, it’s not a curable disease but with growing attention and funding there is hope. 

IN-PERSON WALK – SUNDAY, JUNE 4

Bring your warrior helmets, horns, beards, and braids for this year’s 11th Annual Viking  Challenge. The circular path around the park allows you to choose your distance, whether it’s a block or two, or three miles.   

WHERE

Berens Park, 493 North Oaklawn Avenue, Elmhurst, IL

SCHEDULE – Sunday, June 4

  • 8:30 a.m. – Registration opens 
  • 9:00 a.m. – Welcome & Announcements  
  • 9:15 a.m. – Walk starts – Adults & youth all walk at the same time
  • 10:30 a.m. – Raffle & announce the Tracy Shackelford Service Awardee

VIRTUAL CHALLENGE – MAY 14 TO JUNE 2

  • Choose how to complete your miles – walk, run, bike, swim, paddle. 
  • Complete as many miles as you like from May 14 – June 2.

As you walk, run, bike or swim your way through the Challenge, share your accomplishments, team, or inner Viking! You can post photos on the RunSignup site. Or email your photos and stories to info@myastheniagravis.org.

LOGGING YOUR MILES

As you complete your miles, log your activity in RunSignup, on the Results page. Don’t worry – it’s easy. This short video shows you how: https://www.youtube.com/watch?v=LbIL7aGLk5E

In brief:

  • Go to https://runsignup.com/VikingChallengeforMG 
  • From the navigation, click “Results”
  • Under Individual Results, search on your name
  • Follow the prompts to enter your activity type and miles. Entering the time you took to complete the distance is optional.
  • You can submit one or more activities at a time. 
  • You have until noon on June 2 to log your accomplishments.
  • The first time you log activity, you can set an individual goal for yourself. 
  • Watch for badges to appear on your profile page as you work toward your goal. 

When you log your distance, you also can check where you are on the leader board. Are you ahead of your friends? Check back frequently to see!  

Complete your walking, running, biking, etc., between May 14 to June 2. Submit your miles by NOON, JUNE 2. 

SWAG AND FUN STUFF

In-Person Walk

  • T-shirts for participants.
  • This-is-what-MG-is-like station.
  • Raffle prizes (bring a little extra cash to buy your raffle tickets).
  • Prizes for the best Viking and most funds raised.

Virtual Challenge

  • T-shirts mailed to your home.
  • Downloadable print-at-home bib to take a photo with!

FUNDRAISING: THE HEART OF THE MATTER

Your support is vital to help Conquer MG support people who have myasthenia gravis. 

You can set up your own fundraising page for the Viking Challenge for MG when you sign up, or later. Share your own story, and invite others to support this cause. Your friends and family can add any amount – each dollar counts. (Note: Be sure to use your team name for your fundraising page if you want to ask people to donate on behalf of your team.) Your confirmation email will include a link that you can share with others. 

Facebook fundraisers are another easy way to raise funds for the cause. Here’s a link to get started: https://www.facebook.com/fund/ConquerMyastheniaGravis. We’ll make sure these amounts are added to our overall Virtual Viking total at the end of the challenge.

Proceeds from the Virtual Viking Challenge make it possible for Conquer MG to complete its vital work: support, education, awareness, and research funding to improve the lives of those who have myasthenia gravis.

OR JUST CLICK “DONATE”  

Maybe you’re not up for the walk this year, but we still need your help! Click the yellow DONATE button at the top of this page to donate in honor of someone or donate to their fundraiser (as long as they have set up a fundraising page). 

All proceeds support the mission of Conquer MG. Going strong for more than 50 years, Conquer MG provides support, information, advocacy, and research funding to those dealing with this rare autoimmune disease.  

QUESTIONS?

If you have any questions about this virtual challenge, contact Conquer MG at info@myastheniagravis.org or call 800-888-6208.

ABOUT MYASTHENIA GRAVIS

Myasthenia gravis impairs communication between nerves and muscle, causing sometimes fluctuating and sometimes severe weakness. Symptoms can occur in any combination. They include drooping eyelid(s); double vision; weak arms, hands, neck, face, or legs; difficulty chewing, smiling, swallowing, talking; undue fatigue; difficult breathing; or sense of balance difficulty.

 

COVID and Myasthenia

COVID continues to be a concern if you are immunocompromised or have a weakened immune system because of a medical condition or a treatment for a condition. This is the case if you have myasthenia gravis, and are taking immuno-suppressant medication. The Centers for Disease Control continues to recommenf that those who are immunocompromised or have a weakened immune system because of a medical condition or a treatment for a condition keep their vaccinations up to date.

In late 2022, Linda Loland and Victor Yipp both experienced worsening MG breathing and swallowing symptoms when they contracted  COVID. Here are their stories.

Linda’s Story

By Linda Loland 

I was sure I had managed to dodge the Covid bullet. For more than 2 years I had followed all protocols, but I finally caught it right at home from family members.  

 My COVID started out as a mild cold but within 24 hours I could feel some upper respiratory congestion. Since my MG crisis 6 years ago which landed me on a ventilator for a week, my lungs are the first thing to act up. My doctor advised me to go to the ER and they saw my oxygen level was running low. Along with other risk factors they decided to send me to Glenbrook Hospital where they have a quarantine ward.  I received three days of Remdesivir infusions which greatly helped with the congestion. I felt fine after 5 days but found one eyelid was drooping more and more. I thought it may be residual affects from COVID since I haven’t had any major MG symptoms in four years.  

I was also now due for my monthly IVIG but knew I would not be able to go to the infusion clinic since I had to quarantine at home for another week. Since I had active MG symptoms again, I didn’t want to postpone my appointment. I asked if I could receive IVIG there but was told this was strictly a COVID ward.  

This is when we have to strongly be our own advocates! After unsuccessfully trying to make my case on how quickly this could get worse – usually gagging on food is one of my first symptoms- I had to call in the “big guns” and text my neurologist for help. He once worked at this hospital and he texted me back that I indeed should receive it. I showed the hospitalist the message and I received IVIG the next morning.  

For three months, the eye drooping stayed pretty consistent along with some facial weakness and leg fatigue now. Even with increased prednisone it was not getting better. I met with my neurologist and he felt that the newly approved Vyvgart may work for me.  

A few weeks ago I finished the cycle of infusions. It was a one-hour infusion once a week for four weeks. Right now, my symptoms are much better. In about six weeks I’ll meet with my doctor and see if things are still good or if I might need further Vyvgart infusions going forward.  

Here are my thoughts on the whole situation. As immuno-compromised as we are, we can make full recovery from whatever life throws our way. Keep a positive attitude and remember that we are MG Strong! 

 

Victor’s Story

By Victor Yipp

There’s no cure for Myasthenia Gravis. If you are fortunate, you may be able to achieve a condition of remission. Until you’re not. 

I was diagnosed with the anti-Musk version of MG in November 2017. With the assistance of my neurologists and some specialized medication, I was able to achieve remission from this rare disease (except for fatigue–I need to take an hour nap daily, which is not too much of a sacrifice 😊) until a few months ago. NOTE: While I mention specific medications used for treatment of my version of MG, these are not recommendations for anyone else. You should discuss with your health care provider what treatments are appropriate for your specific MG diagnosis.  

What happened to me seemed like the perfect storm. It all began in Canada, in March 2022. On a ski trip. I caught COVID, fortunately near the end of our trip. Minor symptoms emerged, just a low fever, congestion, and some additional fatigue. But soon enough, long haul COVID set in. I encountered shortness of breath and wheezing. I had to sleep sitting up in order to minimize chest congestion. Then came a mild pneumonia, with an x-ray and antibiotics prescribed by my PCP. Finally, the perfect ending: a relapse of my MG, revealing itself through increasing difficulty in swallowing.  

I went to the same hospital where I was at with my original diagnosis, but this time for only eight days instead of my 32-day stay in 2017. Fortunately, my neurologists knew the drill for me. I started on a course of plasmapheresis, five treatments in all. My swallowing ability increased dramatically. After a few days and with speech therapy, I was able to get back to near normal in swallowing—which I was very appreciative of since I was not too fond of the pureed diet I was put on with my original diagnosis. I was put on low dosage prednisone and sent home. 

A month later I started on a course of Truxima, a biosimilar to the drug Rituximab, which I had taken in 2017 to put me on the road to remission. I received four IV infusions in as many weeks and will receive another two courses this year. Now I feel much more energized, exercising almost as much as I did before I was originally diagnosed with MG. I am tapering off the prednisone and hope to officially be back in remission soon! 

 

7 Tips for Coping during the Holiday Season

By Maria Zepeda, NBC-HWC, and Julie Rowin, MD

 

The Holiday Season is upon us, and this means a wonderful time for some and a difficult time for many. We are living through times of uncertainty and ambiguity which can feel overwhelming. Here are some suggestions on how to better cope with the challenges we face during the 2022 holiday season.

Recognize your feelings. Many people feel lonely during the holidays.  If you are following social distancing, loneliness and isolation may be even more prevalent.  Allow yourself to accept how you are feeling. If you have been coping well, its ok to feel happy and to not feel guilty about it. If it has been a year of challenging circumstances, then allow and accept those associated feelings. You cannot force yourself to be happy just because it is the holiday season. What matters is that you accept how you are feeling, reminding yourself that everything is temporary.

Follow your heart. Once you have figured out how you are feeling, ask yourself what your true desire for this holiday season is, and make it that. Do you want to put up holiday decorations? Do you want to give gifts, or would you rather donate to those less fortunate? Maybe your energy is low this year and you want to take a complete break from celebrating. Remember that it is ok to say “No”.

Stay present. Avoid focusing on what’s happened during the past year or past holidays and avoid trying to predict what may happen in the future. Focus on what you can control, your thoughts in the present moment. If you find yourself feeling anxious, overwhelmed or disappointed, then practice slowing down. Consider going for a walk, meditating, journaling or practicing breathing techniques.

Avoid comparisons. Comparing yourself to others and what they are or aren’t doing for the holiday season can result in feeling defeated. Their situation isn’t your situation and everyone’s experience is different. Take a break from social media and the artificial portrayal of what the holidays should look like.

Share your feelings of gratitude. Gratitude is a practice that has been shown to promote resilience during challenging times. No matter how difficult the situation, if we dig deep enough, we can find something to be grateful for. Make a practice of starting to notice the positives, the little things that bring you joy, and then sharing your feelings of gratitude with someone ‘out loud’. And most importantly, make it a point to express your gratitude for loved ones TO THEM this year.

Be realistic. The most joy comes from the simple pleasure of just being and accepting what is. If you are fortunate enough to be with others during this holiday season, then enjoy being together and expressing the gratitude you feel. If you are struggling with MG, this holiday may look different. You may need to find new ways to celebrate together, such as sharing pictures, emails or videos or meeting virtually on a video call.

Seek professional help if you need it. Despite your best efforts, you may find yourself feeling persistently sad, anxious, or hopeless. If these feelings persist, talk to your doctor or a mental health professional.