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Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

Forbin

Forbin

Senior Member
Messages
966
Simon said:
WE'll tweet the final percentage from the Bahamas just as soon as the bar tabs are in

edit: I suspect this highlights the wisdom of letting Columbia take all the donations direct
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I knew this would wind up going towards riotous living! :)

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Congratulations to all! :thumbsup:
 
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geraldt52

Senior Member
Messages
602
Thank you to everyone at the center of this. It was a huge undertaking, and sticking it out to the end was no easy feat for sick people.

I was hoping for a last minute push, but exceeding $220K in the final days was more than I had hoped for. I think we did well, all things considered, and the thing I am most impressed with is the worldwide nature of the response. I'm still a bit disappointed that the U.S. patient community didn't step up more than it did, but that is offset by seeing so many people in so many scattered places get on board.

Thanks again, for the idea, and the effort that was put into it.
 
Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
geraldt52 said:
Thank you to everyone at the center of this. It was a huge undertaking, and sticking it out to the end was no easy feat for sick people.

I was hoping for a last minute push, but exceeding $220K in the final days was more than I had hoped for. I think we did well, all things considered, and the thing I am most impressed with is the worldwide nature of the response. I'm still a bit disappointed that the U.S. patient community didn't step up more than it did, but that is offset by seeing so many people in so many scattered places get on board.

Thanks again, for the idea, and the effort that was put into it.
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And thanks for all your encouragement and cheerleading (and giving) along the way
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
We have had some very sad news about our friend and colleague, Vanessa.

Our beloved team member Vanessa Li has passed away. Vanessa instigated this project and was a wonderful member of this team and much loved friend. We are reeling from the news and our hearts go out to her family. Dear V had many friends and touched many in our community.

There is some more information on our Facebook page:
https://www.facebook.com/microbediscovery/posts/788074467928256
 
bel canto

bel canto

Senior Member
Messages
246
Vanessa's questions for and discussion with Dr. Lipkin at Stanford last year, as described above, was amazing. She was an impressive young woman. It's incredibly shocking and sad to hear of her passing. Deepest condolences to her family and friends.
 
Countrygirl

Countrygirl

Senior Member
Messages
5,476
Location
UK
http://meluluslegacy.com/2015/02/05/vanessa-deserved-better/

Vanessa Deserved Better
LINK
Posted on February 5, 2015
Wednesday, February 4, 2015 will be a day the close-knit Myalgic Encephalomyelitis community will long remember as being extraordinarily painful. Activist Vanessa Li succumbed to heart failure during the night.She was 34 and had fought M.E. for 15 years. A shockwave could be felt running through social media and M.E. forums as news of her death spread. In the M.E. patient’s’ world, where emotional stressors are paid for in physical pain, Vanessa’s death felt like a literal gut punch.

Vanessa was a superb activist and, although frequently bedbound, she worked tirelessly to advance the M.E. cause. She instigated the Microbe Discovery Project and raised almost a quarter of a million dollars for Dr. Ian Lipkin’s research. She knew the science behind this disease and shared that knowledge freely. Her opinion was valued and many considered her a treasured friend. Vanessa touched many and she is sorely missed.

A day after Vanessa’s death, grief is turning to a slow burn of anger. M.E. claimed Vanessa before she could see the results of her hard labor. She deserved that and more. Vanessa deserved to live her life with M.E. far better than she was allowed.

Vanessa deserved solid, tested M.E. treatments, established by well-funded research teams. She deserved her government to recognize the disease and not turn a blind eye to her suffering. She deserved medical professionals who had received training in M.E. in medical school. She deserved doctors who realize M.E. is not going to be cured by exercise and positive thinking and who worked for her instead of against. And, Vanessa deserved a public who knows about M.E. and who give the disease the same credibility and empathy as MS, Parkinson’s, Alzheimer’s, Polio and AIDS.

On February 10th, the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS will spend an hour unveiling their long-anticipated report. The Pathways to Prevention (P2P) has issued their draft report, collected responses and the final report is due to be released soon. HHS has stalled the patient population for over eighteen months waiting for these reports; this on top of years without advancing a single step toward helping the M.E. community. Now, the reports are done and the waiting is over. It is the government’s time to act.

Congress must be made to hold HHS/NIH and CDC accountable to enact every reasonable recommendation in those reports. Every unreasonable recommendation must be loudly discredited by patients and the experts. Media needs to finally step up and do their part in educating the public and showing M.E. in an honest light. Benefactors need to recognize the tragedy of M.E. and start donating as they do other chronic diseases, including the establishment of a M.E. Society. The hard work is just beginning and every M.E. activist is needed to join the common cause.

Vanessa Li will be sorely missed as the M.E. patients take on this next fight to better their lives. It is tragic she did not live to see real change made in how the world treats M.E. patients. She deserved better. Everyone living with M.E. deserves better.

*********************************************************************************

Please join me in remembering Vanessa Li by donating in her memory:http://www.microbediscovery.org/ http://www.meadvocacy.org/
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B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Nielk

Nielk

Senior Member
Messages
6,970
Vanessa's brother just posted this on the fb memorial page - https://www.facebook.com/vanessali19812015

Dear friends of Vanessa,

We would like to thank everyone who attended Vanessa’s memorial service yesterday in Hong Kong and helped to remember and celebrate her life.

As was announced at the service, we now know that Vanessa took her own life. We discovered a note addressed to her family on her email account several days after her death. We are sorry for leaving some of you in the dark until now but we thought it most appropriate to announce the news at Vanessa’s memorial service.

Here are a few messages that Vanessa wished to share with you all.

For Vanessa, the pain from ME was impossible to describe. She could not go on anymore, not like this without any cure. It was too painful. She felt that ending her life was simply a practical solution.

She wanted the world to know that she ended her own life and she wanted her death to serve something. She wanted to spread awareness of the truth about ME, and the lack of research into the illness as a result of neglect from medical authorities worldwide.

She wanted her body to be donated for the purpose of researching ME. We have already arranged for this to happen.

Lastly, she wished to say sorry to all her friends, to whom her passing comes as a shock.

We would also like to announce that an online vigil to remember Vanessa will be held at 1pm US Eastern time on Wednesday 18th February, where a video of the memorial service will be played live. You will have a chance to share your memories of Vanessa with all those who have been touched by her. Further details of this online vigil will follow.

Praying for peace in your hearts,

The Li Family.
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W

Wally

Senior Member
Messages
1,167
Oh! No. I was so hoping this was not true. :cry:

In memory of Vanessa and those who have gone before her, I am so sorry that we were not able to hold onto you through your darkest hour. While many of your friends do understand why you chose to no longer live with the torturous pain you faced everyday, we are so very sad that you are no longer with us. May your beautiful soul rest in peace.

 
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