The Myositis Association - Vance Robinson

Vance Robinson is one of our strong myositis warriors. He lives with IBM and works daily to spread awareness and is an inspiration to so many! Support our community members like Vance through the October Giving Opportunity for Inclusion Body Myositis.
Support our community members like Vance through our annual end of summer fundraising appeal! Thanks to the generosity of the Bill M. & Cecile Autrey Ham Charitable Foundation, all October Giving Opportunity donations will be MATCHED, up to a total of $30,000 now through October 31st! Your gift and the foundation’s matching contribution will be earmarked specifically for TMA’s Inclusion Body Myositis Research Fund and used to fund innovative science through research projects supporting learning of and progress for inclusion body myositis.
Inclusion body myositis (IBM) is the most commonly acquired myopathy in patients over the age of 50. Symptoms of inclusion body myositis progress more slowly than the other types of myositis with weakness increasing gradually, sometimes over years. Some of the first signs are falling, difficulty getting up from a chair, and weakened grip. Muscles most often affected are those at the front of the thighs, those that elevate the feet, and those in the hips, fingers, wrists, upper arms, shoulders, neck, and back. Many IBM patients notice shrinking (atrophy) in the arms and thighs as the muscles become weaker. Trouble swallowing, or dysphagia, is a common problem for patients as well. There is no cure for any of the types of myositis and no approved treatment for IBM patients at this time.
Don’t wait! Take advantage of this incredible opportunity to have campaign gifts matched as we work to facilitate a cure for myositis.
www.myositis.org/get-involved/fundraise/campaigns/october-giving-opportunity-inclusion-body-myositis-research-fund/

[@farmingirl4281]

God bless you! Wish you all the best❤

[@Philipdhow]

Hey! Thanks for telling your Story😊 I similar to what I’m going through, I’m possibly around 1-2 using a stick but able to walk around the house… The best thing is to keep a smile on your face, the most difficult thing about the disease is that you can’t do the things you used to… Life goes on and there are amazing people around you… God Bless Phil from Australia 🇦🇺

[@ladeek35]

I’m being tested for Polymyositis now. In wheelchair & going blind. Bless you brother. You made me laugh so hard…your Pitch Campaign, I thought you said BITCH CAMPAIGN!😅😅 Remember: We are doing great, we don’t have arse crack showing at Walmart!

[@aabbo2]

👍

[@tyroneshelton]

It’s totally amazing to hear the similarities between you and myself. And understand everything you’re going through. Which Myositis have you been diagnosed with? Since 2010 people ask why I’m always so upbeat. I don’t have any other choice really. You’re bigger like me so I’m sure people view you as “Normal” when you’re not in a wheelchair. It’s definitely a hidden disease, that affects us all in different ways. I’m praying for you as I pray every light. BTW, I have Polymyositis and Dermatomyositis.

[@Govstuff137]

I have IBM. I'm finding there is little research on it. I found some recent research in Canada but very little in the US. Can we do some research using Facebook. It would be good to see if IBM people have some sort of trigger that is common to all of us. We know the symptoms that are common to us but we don't know what triggers it. Genetically what might we have in common. It's a thought. I don't know if there is any interest.

[@tomriley9960]

HI VANCE WE BOTH HAVE VERY SIMILARITIES! I WAS GOLFER, CADDIE & LOVED FISHING! WOULD LIKE TO TALK WITH YOU ON MYOSITIS SUPPORT & UNDERSTANDING WEDNESDAY ZOOM THEY HAVE A APP I JUST JOINED CALLED CLUBHOUSE. PRESIDENT JERRY WILLIAMS OF MSU IS A VOLLENTEER WITH MYOSITIS. THANKS FOR SHARING YOUR STORY MINE IS VERY SIMILAR TO YOURS! TAKE CARE, TOM🍀