Eddie Vedder - Matter Of Time & Come Say Hi - New Film on Netflix Feb 9th

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  • demetrios
    demetrios Posts: 98,559

    We stepped onto the floor of the New York Stock Exchange this week carrying something you don’t usually see there: the urgent hope of families living with EB.
    Thomas, who lives with Epidermolysis Bullosa, and Michael Hund, EB Research Partnership CEO, were invited back to the NYSE, after we rang the Opening Bell earlier this year, to share why EBRP’s approach is different.
    We use our Venture Philanthropy model because curing EB takes courage and innovation. By pairing bold thinking with strategic investment, we help move treatments forward and ultimately a cure... faster, smarter, and with families at the center.
    In the middle of one of the most powerful centers of commerce in the world, Thomas spoke with honesty about resilience and what EB has taught him.
    The interview will air next month. Stay tuned.
    Donate before Decembet 31 to help accelerate the next breakthrough: https://bit.ly/4p6vXoV





  • demetrios
    demetrios Posts: 98,559



  • demetrios
    demetrios Posts: 98,559
    demetrios said:
    Toronto Jan 17th




    Tickets still available. 


  • demetrios
    demetrios Posts: 98,559

  • demetrios
    demetrios Posts: 98,559
    https://instagram.com/p/DS-cx7mmN6v/embed/

  • demetrios
    demetrios Posts: 98,559

    Now Showing…

    In just a few days, Matter of Time will be screening in Pittsburgh on Jan. 14 (Join waitlist) and Toronto on Jan. 17 (Get tickets). Learn about the award-winning documentary film (Here).





  • demetrios
    demetrios Posts: 98,559

    LIMITED SEATING NOW AVAILABLE! Final opportunity to attend is at matteroftimefilm.com/pittsburgh!
    Wednesday, January 14, Matter of Time comes to Pittsburgh for a sold-out premiere and panel honoring the EB community and the scientists, clinicians, and philanthropic partners working together to accelerate treatments and a cure for Epidermolysis Bullosa.
    Every voice on this stage reflects what’s possible when patient urgency meets scientific innovation and mission-driven philanthropy, and why progress is no longer theoretical.
    We’re grateful to share this meaningful night with our Pittsburgh community.


  • demetrios
    demetrios Posts: 98,559
    Tonight


    The Event
    Following the success of its world premiere as an official selection of the 2025 Tribeca Festival, the award-winning Matter of Time is coming to Pittsburgh to continue spreading EB awareness and bringing us closer to a cure!

    We’re honored to bring the film to the iconic Roberto Clemente Museum for an unforgettable night! The evening will feature a cocktail hour, special screening, and a moving panel with EB families, leaders, and voices from the film to highlight how Pittsburgh's leadership in EB and rare disease research is revolutionizing the field!


    ​The Details
    📍 WHERE: Roberto Clemente Museum: 3339 Penn Ave, Pittsburgh, PA 15201
    🗓️ WHEN: January 14th, 2026
    ⏰ TIMING: Cocktail hour from 6-7PM followed by the film screening and Q&A panel from 7-9:30PM

    ​Every dollar raised through this event directly supports innovative research that will accelerate treatments and cures for EB!




  • demetrios
    demetrios Posts: 98,559
    We’re proud to share that Matter of Time will premiere globally on Netflix on February 9, 2026.

    Matter of Time follows our fight at EB Research Partnership to cure EB, told through the voices of EB families, the researchers racing toward new treatments, and a community refusing to accept the status quo. Set against the backdrop of Eddie Vedder’s powerful Seattle benefit concert, it’s a story about what happens when urgency meets innovation, and people show up.

    We’ll be sharing behind-the-scenes moments from the film, stories from the EB community, and how you can activate and get involved to share the film with your community.

    After a 40+ city theatrical run, this story is ready to reach the world.

    Because for families living with EB, this isn’t just a release date.
    It’s a moment they’ve been waiting for. 🦋

  • deb1211
    deb1211 Posts: 2,237
    Im so excited to get to finally watch this

  • Shaindli1
    Shaindli1 Worcester, MA Posts: 2,951
    I'm so pumped for this!
    #Grievance2025 

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