Hope Runs Deep

I was diagnosed with MG just before Christmas of 2001. For those of you who knew my family and I then, you witnessed the physical, emotional, and spiritual hardships of the diagnosis process. Being diagnosed at such a young age made it difficult for me to fully process the long-term effects of living with a chronic illness with no known cure. Most of my adolescent life, MG was strictly a need-to-know part of my life for family, medical professionals, and close friends. I felt uncomfortable claiming it as part of my life, and I feared explaining to my peers the complexities of looking healthy while your immune system attacks its body.

It has been a winding road already with MG, and I was able to experience 3 years of remission in college. When my symptoms relapsed in 2010, I was devastated. It was around this time that I realized I had to start actively acknowledging MG as part of my life beyond just writing it down on required medical forms.

It has only been in the last year that I have become more visible and vocal for Myasthenia Gravis Awareness. I made a resolution to myself (and to Travis) last year that I would become involved in online support groups to help me manage better with MG. It is a rare disease, and it can be lonely. In the last 14 years I have only met 2 other people who have it. Both of them came into our lives at times when I really needed someone, and one of them has become one of my mom’s best friends. She is a true gem.

It is with a lot of excitement that I’m sharing this news. The Myasthenia Gravis Foundation of America started putting on Walks 5 years ago to raise awareness and money for the campaign for a cure. They are the only foundation in the US dedicated solely to the fight against MG.

I’ve been asked to be the South Carolina local hero for this year’s walk!

At each walk, a “local hero” is honored for going above and beyond to support the MG Walk Campaign. They tell the details of their own unique MG journeys, reminding donors why we are uniting with a common voice to find a cure for MG. I am honored and humbled to be a local hero this year. It’s a huge step for me to be confident as well as vocal and visual about MG awareness.

I am walking this year in honor of the community of friends, family, doctors, nurses, and teachers who have supported me for the last 14 years of this journey. I am also walking in honor of those in the MG community who are not strong enough to walk this year.The walk takes place on Sunday, March 29th at the Riverfront Park & Canal in Columbia, SC. You can read more about this year’s national and local walk heroes by clicking here.

If you would like to join my team or donate to the cause, please click here.  

I am asking each of my friends and family members to consider donating $1 to the MG Walk Campaign in my honor. Quiet voices that join together will be heard. You may feel that just $1 won’t make a difference, but it will. $1 from each of my subscribers is another $65 of money for research that is desperately needed.

In the last 5 years, the MGFA has raised a combined 2.5 million through the walk campaign. The walk campaign added considerable growth – before the walks they were bringing in about $400,000 annually in donations. In comparison, in 2014 alone the ALS foundation received 29 million dollars in donations. We don’t have a corporate sponsor, viral videos, or a celebrity face to put with the name. What we have are our communities of support, our friends and families who have seen the day to day and even hour to hour struggle against MG. We have a grassroots movement of MG patients trying to raise awareness in their towns so that in my lifetime there will be a cure.

There are roughly 40,000 – 60,000 Myasthenia Gravis patients in the US today. There is still so much unknown about our disease; they don’t know what causes it, and there is no known cure. There have been a few huge breakthroughs in the last few years – identifying two additional antibodies that attack the nerve junctions, and new treatment options are emerging. We need quiet voices to join together to be heard – and to raise money – to give us better treatment options, better educational programs, more community support, and to find a cure.

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