Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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In memory of Justin Noble - Justin30 on PR

Discussion in 'In Memory of ...' started by ScottTriGuy, Oct 22, 2016.

  1. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Bristol
  2. Groggy Doggy

    Groggy Doggy Mermaid.....lost on land

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    When I first read this thread last night, I cried uncontrollably; I felt so many things. I didn't know what to say, so I waited until today to compose my thoughts. Like others have posted, over time I grew attached to Justin. He was a bright, motivated, and caring individual.

    In some naive way, I assumed Justin would continue advocating for many more years, and eventually reap the benefits of gaining ME treatment to enable a better and more fruitful life. He was not just a member of the PR community, but a vital part of the PR landscape.

    writing community of love.jpg

    I see this image depicting Justin's interactions with the PR community.

    Justin, I miss you deeply. May you continue to love your beautiful son, family, and friends.

    GD
     
  3. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    We are so sad to hear of Justin's passing. We at OMF want to honor him and I am working with his mom to do that. Wish we could do it faster, but Ron and Linda are both in Florida at the IACFSME Conference. It will be announced shortly on the OMF fb page as well as here.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    @Rose49 This is amazing that OMF will be doing something to honor Justin. I am sure it will be lovely. (Best wishes to Ron and Linda at the conference as well).
     
    SueJohnPat, MeSci, barbc56 and 8 others like this.
  5. leela

    leela Slow But Hopeful

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    I am only just seeing this devastating news. Such a bright, gorgeous, caring young man with so much to contribute.
    My heart is utterly broken for him, for his parents, for his friends, for this community which bears up to so much suffering and so much needless loss.
    The photo of him with his baby...so many tears. And the gut-punch of how invisibly wretched and horrible this illness is.
     
  6. mfairma

    mfairma Senior Member

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    I'm just seeing this. This is heartbreaking.
    :cry:
     
    MeSci, rosie26, barbc56 and 7 others like this.
  7. Denise

    Denise Senior Member

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    I have no words other than
    I am so sorry.
     
    MeSci, rosie26, barbc56 and 5 others like this.
  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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  9. Hutan

    Hutan Senior Member

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    Thanks @Rose49. What a positive way to honour Justin's memory. Thanks to Justin's parents for allowing this. Their staunch support of Justin and all of us with ME/CFS marks them out as special people.

    Have donated.
     
    justy, rosie26, barbc56 and 7 others like this.
  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Justin's parents had a larger role than simply approving this Internship. They had announced that "in lieu of flowers, please donate to the Open Medicine Foundation." The Open Medicine Foundation then worked with them to both honor Justin and to help carry on with the advocacy for ME/CFS research that was so important to him. Thanks to all involved for making this happen.
     
    Justin30family, MeSci, justy and 26 others like this.
  12. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I was very saddened to learn of Justin's passing and so moved by his parents' decision to have donations made to OMF. I wanted to have OMF not just accept donations, (which would be great in itself of course) but to do something special with those donations to honor Justin. I asked Ron if there was something that could really tangibly help the research that might be doable with these donations. He thought of the internship. I asked Linda Tannenbaum about it and she loved the idea too. So Ron worked out some details and I called Justin's mom, Susan, and asked her if she liked the idea. She was thrilled too. Ron and I and Susan wrote up the announcement, and Marilyn of the OMF made it pretty. It was a team effort, and we are very glad to be honoring Justin in a way that we all believe he would love - working for fast answers to a cure for CFS!
     
  13. Daffodil

    Daffodil Senior Member

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    Beautiful way to honor Justin's memory. What a wonderful family.
     
    MeSci, justy, rosie26 and 9 others like this.
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    A note on Facebook from Justin's sister Kirsten:

    Dear friends and family,

    Recently, I met a young woman who received a packet of letters on her 16th birthday. These letters were stories and memories about her Mom, who had passed away when she was a little girl. The woman told me this was the best gift she could have ever received as it gave her a glimpse into her mother’s life.

    I have been thinking of ways to tell Jace about his Dad, however I realized from reading this Memory page and talking to many of you, that I don’t know all the stories and experiences Justin had. Please help me in journaling Justin’s life, by sharing a favorite memory or story of your time with him. Please include in your letter who you are and how you knew Justin. Thank you in advance for sharing!

    I will have a table with cards set up at his memorial reception for you to fill in or please mail a letter to Jace Noble:

    c/o Kirsten Noble Zwarick
    4046 Crescent Road, Ellicott City, Maryland,
    21042 USA

    Thank you so much!
    Kirsten
     
  15. Kina

    Kina Moderation Team Lead

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    I am posting this on behalf of one our members (@JMadigan) who attended Justin's memorial service.

     
    Last edited: Nov 22, 2016
  16. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thank you @JMadigan - you made me feel like I was there.
     
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  17. JMadigan

    JMadigan

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    You are 'all' most welcome!
    Beautiful service and without question, a wonderful Family but ....
    trust me, without the 'ongoing help' from Kina that posting would not have been possible.
    Thanks again Kina! xx
     
    Justin30family, MeSci, Hutan and 17 others like this.
  18. EMilo

    EMilo Elizabethmilo.com

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    IMG-20161123-WA0001.jpg IMG-20161123-WA0002.jpg My sister was in downtown Seattle for the first Millions Missing protest. She wound up talking to Justin's mother, they discussed how my immunoglobulin infusions were the first thing to help my symptoms even marginally. My sister called me afterwards and said, "It made such a difference talking to somebody whose loved one is also sick with ME." I was very grateful for that at the time-- that Justin's parents had traveled down from BC, that they'd somehow made me feel a little closer to my sister just by offering her understanding. She took these photos of them.

    I never talked with Justin, but I thought about him and his parents, just north of us, hoped he'd be able to try IVIG... This news breaks my heart. So sorry for everyone's loss, especially his family. ❤
     
  19. dannybex

    dannybex Senior Member

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    So very, very sad.

    I wasn't able to get to the protests, but did get in touch w/Justin because I had heard his parents were coming down to show their support. We kind of lost touch until I contacted him again in September to see if his folks would be in town for the 2nd protest, and ended up 'talking' with him again for quite a bit.

    His last reply was October 12th.

    As others have mentioned, he had been diagnosed with paraneoplastic syndrome, but even so, said he felt like he had ME/CFS. He was severely tormented and tortured on many levels yet always tried to be as upbeat as possible. If there is any 'good' here, it's that he is no longer suffering, but oh how terrible this must be for his dear parents.

    My heart goes out to them.
     
  20. kangaSue

    kangaSue Senior Member

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    My heart felt condolences. I only recently learned of Justin's passing and, while I haven't had a lot of interaction with Justin, his being cut short so early in life is a good reason why everyone should be freely able to access some sort of autoimmunity (paraneoplastic) syndrome antibody test panel without being made to feel like you're a complete head case by some alleged medical professional who is probably lacking in any understanding in the area anyway.
     
    Hutan, justy, dannybex and 4 others like this.

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