Lexi Pappas

I’m excited to remain on the pirate ship @barstoolsports for 2026 where I’ll continue to share my stories! Thanks so much for all your support during some of the most difficult times. It’s much appreciated. Full-circle moment: the video that started it all became a song this week thanks to the @gregorybrothers. Viva La Stool!

We all we got. We all we need. LFG Patriots!

On Sunday, I was able to knock something big off my bucket list at Fenway Park. I always told my wife that when I retired, I wanted a job working for the Fenway Park Grounds Crew. The crew that’s responsible for maintaining the most beautiful & historic ballpark in MLB. My son Dylan told me he was going to make it happen for a day. He got in touch with Big Cat, who got in touch with Jared Carrabis, and on Sunday night vs the New York Yankees, I was a member of the Boston Red Sox Grounds Crew! Thank you so much, @BarstoolBigCat & @Jared_Carrabis! My son @DLeVine7893 and his wife @LexiPappas_ are working on a documentary about dealing with grief and trying to continue living beyond incredible loss. On Sunday, I continued living and I know my wife would be so happy.

There haven’t been many good days since my wife passed on May 9th. Yesterday was different. First, my friend John Fraatz surprised me when he stopped by to see how I was doing. Then @EddieBarstool came by with two cheese pizzas from Lynwood Cafe (Randolph). He’s in from Chicago to attend @danabeers wedding. And just as they were leaving, Art Taylor from Atypical Farm (Norton) came by with plants and flowers for the raised bed garden I’m bringing back to life for Susan’s Celebration of Life in June. Art did all the planting. Susan’s favorite color was purple… It’s good to have friends…

On Friday, May 9th, at 5:13 pm, my beautiful wife Susan, passed peacefully, in our home, surrounded by family, and took her spot in Heaven…

This is what it’s like having #FSHD, according to a 12 year old.

Cancer SUCKS! Can you give me a “Hell Yeah”?

Sign this petition demanding that every FSHD patient—regardless of age or mobility—has a fighting chance to access a cure! change.org/p/access-to-th…

Imagine being told there’s a treatment that could change your life, only to be turned away because you don’t fit the criteria. Today, we’re launching the #CureFSHDForALL initiative, because every person living with FSHD deserves to have access to life-changing treatments.

Today we announced the filing for clearance to initiate a Phase 1/2 clinical trial of ARO-DUX4, our investigational #RNAi therapeutic being developed as a potential treatment for patients with facioscapulohumeral muscular dystrophy. Read more here: fal.cn/3zWAE $ARWR

A big thank you to Chip Wilson for sharing his FSHD story! To learn more about Project Mercury and what countries around the world are doing for #WorldFSHDDay, visit bit.ly/3JnoHTI 🌎🧡

Exciting news on #worldfshdday! We are officially announcing the launch of Project Mercury, an unprecedented collaboration of global stakeholders committed to speeding development & delivery of FSHD treatments. Read the full announcement from @FulcrumTx bit.ly/3CEPiry

Get ready for World FSHD Day on June 20th! This day is all about your chance to share your story! Share some Orange Slice Selfies and use the hashtag #WorldFSHDDay on June 20th. We have a toolkit so you can get ready to share on World FSHD Day! bit.ly/43Whj9s

The doctors @ B&W Hospital determined my wife had an obstructed bile duct (liver). They cleared it & put in a temporary stent. She’s feeling better & resting comfortably. If this keeps up, we’ll be dancing @ my son’s wedding in August like we did @ ours 44 years ago!

@LoveBugAngel Hey there!!

@LexiPappas_ fellow FSHDer here. Hi!

Dark Brandon made an appearance at the White House Correspondents’ Dinner.

@cardenonwheels @MARTAtransit 🔥🔥

@balancewithgina Just saw this 😩😂

It’s time… TO CELEBRATE @LexiPappas_ 🤍🌞💍🍹👙🍉

@balancewithgina I can’t wait to see them! 😎🎉

@LexiPappas_ I can’t wait to pick my florida nails 💅🏽😆

WHAT COLOR SHOULD I GET MY NAILS DONE?!