2017: Year in Review

A lot has happened in the past year. It’s been crazy, but I was able to do a lot of the things I wanted to do. I was able to spread awareness about FSHD with my documentary, fundraising, a film festival and so on. Here is what has happened this year…

My Documentary: I completed and posted my Documentary on YouTube and now it has almost 25,000 views! Pretty insane and I honestly did not expect it to get so many views. It was shared a few hundred times on Facebook, which definitely helped to get it noticed.


Fox 25 News: I was interviewed for a short segment on the local Boston news. I talked about how I am trying to spread awareness about FSHD through my documentary. It was crazy to see myself on TV; but I think it helped a good chunk of people, learn more about this rare disease. Link here: http://www.fox25boston.com/news/local-family-hopes-rare-disease-awareness-will-bring-them-a-cure-1/601175523

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Charity Bartending: In July, I decided to do this “charity bartending” event at the bar, McGreevys, in Boston. I invited some family and friends and raised about $400. It was so much fun! Basically, I got to be the bartender for the night and my family and friends ordered drinks from me at the bar. All of the tips and 10% of total sales went to the FSH Society.


Film Festival: I submitted my documentary in a few film festivals just for the heck of it! I know my documentary isn’t of the highest production value, but I thought it would be amazing to attend a film festival and see my film on the big screen. I was actually accepted into the Atlantic City Cinefest! My boyfriend and I made our way down to NJ and saw my film at the screening, along with some other awesome films throughout the weekend. People asked some great questions about it while I was there, and it was great to chat with them about the disability and the filming process.

FSH Society Radio Show: Was a featured guest on the FSH Society Radio show hosted by Tim. Got to share my story and hear other peoples stories about how they live with FSHD. First time I’ve ever been on a radio show…it was weird to hear my voice when I listened afterwords, but it was so fun! Heres the link: http://www.blogtalkradio.com/fshsociety/2017/12/28/fsh-society-radio-live-show-8

Fulcrum: Was invited along with other FSHers to Fulcrum Therapeutics, a biotech company in Cambridge researching treatments for FSHD. We talked about how FSHD affects our lives, so they could learn a bit more about the people living with it.


MD Article: Was featured in an article by Muscular Dystrophy News with my mom. We talked about our relationship and how everyday life is affected by FSHD. It was super cool to see my name on there! Link here: https://musculardystrophynews.com/2017/03/23/fshd-interview-diane-lexi-pappas-of-massachusetts-on-living-with-fshd/

I probably missed some stuff, but it’s been a great year and I can’t wait to see where 2018 brings me!!



3 thoughts on “2017: Year in Review

  1. I found your blog while collecting information for a class. I am a VR counselor, and I have FSHD. Your random thoughts amuse me… never thought of why my bra straps are always slipping until you said that. I enjoyed reading all your comments and so many of them mirror my own experience. I wish you well!

  2. I’ve been laying awake at night feeling frustrated. About falling, about all the bruises on my legs. About all the comments and stares from strangers who had no business in judging the way I walk. I felt like no one understands. Then I came upon your blog. It was like reading my own thoughts. Thank you.

    • Hey, sorry I am just responding to this, but I feel you!! And actually before I saw your comment I just wrote a blog post on that exact topic! Check it out, I’m sure you can relate.

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