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In memory of Justin Noble - Justin30 on PR

Groggy Doggy

Guest
Messages
1,130
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
 

Janet Dafoe

Board Member
Messages
867
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.
 

Gingergrrl

Senior Member
Messages
16,171
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.

@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).
 

leela

Senior Member
Messages
3,290
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.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Thanks to Justin's parents for allowing this.
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.
 

Janet Dafoe

Board Member
Messages
867
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.
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!
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
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
 
Messages
10,157
I am posting this on behalf of one our members (@JMadigan) who attended Justin's memorial service.

I learned of Justin's passing approximately 1 week or so ago. I was absolutely horrified that he was taken at such a young age. No Parent should ever have to witness the 'wrath' this disease takes on their child.
Having experienced the up's/down's of ME for the past 25+yrs. ... seemings much longer, I decided to check the 'blogs' and find out about this mystery man, whom I've never had the opportunity of communication.

From my search I found out that not only did Justin30 reside in the same city, but resided less than 2 miles up the road. I feel awful for not knowing and now it's too late. Could I have 'helped'? .... probably not, but possibly. Most would agree, life is precious and far too short.
Many of you at Phoenix Rising should be proud of your ongoing sharing (when able) with Justin and I truly believe it helped ‘ease’ the pain, during his battle with this horrific disease.

May his beautiful soul R.I.P and light.

I attended Justin Noble's Service this afternoon and it was INDEED a "CELEBRATION of his LIFE"!

I am unaware if anyone from Phoenix Rising was in attendance to give a proper report, but just in case thought I would share the following. I was ill for 3 days and today is my first day up and out. I apologize in advance as this will be less than succinct but it's the best I'm able to do.

The Chapel was packed and surmise (by the sheer numbers standing in the entrance) that the adjacent large tent equipped with seating, audio/video and heated was every bit as full as the Chapel. Luckily, it was a dry day but very chilly.

Susan (Justin's mother) graciously met and seated each and every person herself. I had not met Susan before and I must say her greeting was as though being welcomed into her own living-room. What a 'rock' or 'true grit' (for those old enough to know) …. certainly indicative of the strength and warmth the 'Noble Family' bears.

Susan read a ‘Special Message’ to Justin. It was truly beautiful and heart wrenching! (cannot comment further – would be a heap on the floor requiring mega tissues).

Mike rendered a marvelous 'Celebration of Justin's Life'.
Mike and Kirsten (Justin's sister) had been dating overseas and it was time for Mike to meet 'the parents'. Justin was only 6 or 7 years of age at this time (Mike's first meeting), but having a great respect for one another a true-blue friendship quickly evolved. Mike pointed out a host of activities which Justin enjoyed from fish and aquariums to (sorry, memory) and how carefully he researched and was 'intensely devoted' to everything he took part in.

Many Phoenix Rising members possibly know of Justin's love for hockey. Apparently, Justin was an 'exceptional' hockey player. In his early teens Justin was chosen to go to Oregon. Justin declined the offer as his family took precedence and he hung up his professional boots for his pleasure only skates.

My apologies, my memory is fading fast. I am hoping a healthier ME person might impart better details or perhaps an audio of the Service might be made available for members.

There were five delightful and brave young men sharing stories of their departed friend.

Many of the stories were heart wrenching and it's beyond my comprehension how well these gentlemen spoke and stood tall throughout. Not all of the stories required a tissue. In fact, for the moment, please envision what ‘antics’, your best friend, school mate or co-worker might like to share? Hmmm, we all have a few of those, including the 'Don't Tell Mum & Dad', etc... . Many giggles and much loving laughter was obviously enjoyed!

There were numerous accounts of Justin's daily passion of fishing as well as the many frequented 'secretive' spots. One of Justin's fishing friends promised to to teach Justin's son, Jace, this 'art' so it could be passed down in future generations.

Yes, Jace and his mother (please forgive me for forgetting her name) attended the service and reception. Jace, without question is as 'cute' as you can imagine, sporting those huge round eyes, we all crave to have been born with.

For those Phoenix Rising members who might be wondering, Mike made it exceedingly clear, several times .... the formality of marriage had been delayed due to the birth of Jace and (again, my apologies) 'Jace's Mother' whom they dearly loved, would 'always be welcome' in their home.

Unfortunately, I was only able to attend the reception for a very short time. Those attending thoroughly enjoyed an enormous spread of delectable food and much banter.

Lastly, I wish to express my sheer amazement as to the unquestionable warmth and strength provided by this huge family among friends & relatives. I wish them the very best in all their future pursuits and with much peace and happiness.

Sincerely - JMadigan

Pls. Note: Many Thank You's go to Kina, a 'Volunteer Moderator' at Phoenix Rising, who came to my 'rescue' and made the above possible! It was an enormous task & cannot thank you enough Kina. Cheers - Jane
 
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EMilo

Elizabethmilo.com
Messages
223
Location
Seattle, WA
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. ❤
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Justin's parents at the Missing Millions in May. Remember how Justin was asking for our input on the best message to put on the posters? Here is what they decided on:
index.php

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.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
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.