Zackary Frankel is one of those people who goes all in. When he picked up running about 10 months ago, he didn’t go on casual jogs – he entered the lottery for a spot in the New York City marathon. When he found out he had a spot, he didn’t merely want to run – he wanted to run for a purpose.
Enter his girlfriend, Julie Gordon. Julie was diagnosed with myasthenia gravis in July 2019, a year before she and Zack met. Although her MG was stable for about two years, she had a difficult flair up last winter. Experiencing that alongside her, Zack saw first-hand how MG can turn a person’s life upside down. He decided to run the marathon for MG awareness and in support of the MGFA’s vision of “A World Without MG.”
MGFA sat down with Zack and Julie to talk about the marathon and why supporting the MGFA matters to them both.
What made you decide to run for myasthenia gravis awareness?
Zack: Running is something I’ve always wanted to do. This will be my first marathon. I’ve never done anything like this before, but I’m very into trying new things, and I knew I wanted to do the race for a good cause. I wanted to support a cause that was a little more personal to me, and Julie’s MG is definitely one of those. She was diagnosed about a year before we met. She told me all about MG and her flare ups. She found it hard to talk about it originally but got more comfortable and told me about the symptoms and what the average person deals with every day. It’s definitely very difficult when she is having a relapse, though the majority of the time she’s ok with no symptoms.
Julie, how did you feel when you heard what Zack was doing?
Julie: I think I cried when he told me or when I read the blurb on the fundraising page.
Zack: You cried both times!
Julie: My myasthenia gravis is something only my immediate circle knows about. I used to be really vocal when I was first diagnosed, and then during remission it kind of left my brain. But I had a major relapse last November through April, with droopy eyes, smile stuff, double vision, all that. Zack saw it all because we had just moved in together. He went to walk the dog and came back with two eye patches – one for him and one for me. That’s all anyone can ask for when they’re going through a crisis, that you have a support system and a partner who tries to understand and be willing to walk out with an eye patch when he doesn’t have to.
Why is it important for you to give back?
Zack: Finding a cure for MG would be the ultimate goal, so supporting the MGFA really resonated. I hope to bring awareness of what MG is to people.
Julie: The first thing I was told when I was diagnosed was that it’s manageable, but there’s no cure. Hearing that when you’re first diagnosed… “This is forever”… Not knowing when a flareup is going to happen is something I’m constantly worried about. Different life events come up, you don’t know if you can go. It’s a constant almost trauma. The thought of more people knowing about it and increasing treatment options that will work better long-term is my why.
Want to support Zack’s quest to run 26.2 miles for myasthenia gravis awareness? Make a gift to his fundraiser!