I happened to be on LinkedIn when an update popped up. "Thomas Hennessy has a new connection," it said. Weird. Did somebody take over his account?
At any rate, it reminded me that I still need to post names of organizations that he would have liked people to donate to. Sorry for the delay. I really haven't wanted to write this.
In alphabetical order:
Immune Dysfunction Association
This Vermont-based organization raises awareness for ME, supports and advocates for Vermonters who suffer from ME and related disorders, and facilitates the education of patients, families, healthcare providers, and primary care physicians about ME.
Invest in ME
An independent UK charity that campaigns for biomedical research into ME.
The Massachusetts CFIDS/ME & FM Association
An organization that educates healthcare providers and the general public regarding myalgic encephalomyelitis and fibromyalgia.
May 12 International Awareness Day
Tom pretty much invented ME Awareness Day.
National Advocacy Alliance for ME/CFS
A network of organizations and individual advocates who engage with government officials to promote change in federal public health policies to better meet the needs of people afflicted with ME.
National CFIDS Foundation
The Foundation's objective is to fund research to find a cause for ME, expedite treatments and eventually a cure, and provide information, education, and support to people with ME. They began a fund for Tom when he was in a nursing home not long ago.
The Nightingale Research Foundation
Founded by Dr. Byron Hyde in 1988, the NRF provides technical assistance and information to healthcare professionals and researchers to help North Americans who have or are related to somebody disabled by ME.
PANDORA
Pandora does advocacy for patients with neuro-endocrine-immune diseases, including ME and chronic Lyme disease.
Wisconsin Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association, Inc.
A nonprofit dedicated to assisting Wisconsin ME patients.
Thanks to Joni Comstock, Juliet, Pat, Lois Ventura, Erica Verrillo, and Victoria for contributing names of organizations.
Tom also had chronic Lyme disease—somehow I managed not to know this until after he died. If anybody knows of Lyme organizations Tom specifically endorsed, I'll post those too.
Showing posts with label Tom Hennessy. Show all posts
Showing posts with label Tom Hennessy. Show all posts
Tuesday, October 1, 2013
Wednesday, September 11, 2013
RIP Tom Hennessy
Dammit.
Tom Hennessy was an ME activist. Though he was desperately sick himself, he fought for over two decades to get people to take myalgic encephalomyelitis seriously, call it by the right name, and fund research for a cure.
I first encountered Tom in 2008. Ron and I had just released a recording of "Everybody Knows About Me," our ME advocacy song, and I wanted advice on how to get it out into the world. I found his site, RESCIND (no longer online), and figured he'd be a good person to contact. He loved the song. He proposed hosting it on RESCIND to raise funds, which we did. He was so passionate and enthusiastic, despite the havoc his disease had wrought on his body, despite his anger at the indifference and scorn leveled at sufferers.
The last time I talked to him was a year ago, via Facebook. I linked him to a song I'd written recently, and he expressed his frustration about not being able to do more for the cause. He'd wanted to put a huge, big-name fundraising/awareness concert together, but he got into a car wreck before plans took off. He still had hope that he could make it happen if a couple of big names did more of the heavy lifting.
Now he's gone. Died by his own hand. It's stupid for me to be surprised, as this is a common cause of death for people with ME, but he seemed like one of those people who would fight forever. Live forever.
I wish his story had a happier ending. RIP, Tom.
I wanted to close this with a link to a charitable organization that funds ME research or ME awareness. Unfortunately, I don't know where Tom would have wanted the money to go. His obituary page lists two places where memorial contributions can be sent, but one of them is the CAA, and I know for damn sure he wouldn't want you giving them the time of day. If anybody has a better idea, please contact me at susan[at]cinderbridge.com or leave a comment.
Tom Hennessy was an ME activist. Though he was desperately sick himself, he fought for over two decades to get people to take myalgic encephalomyelitis seriously, call it by the right name, and fund research for a cure.
I first encountered Tom in 2008. Ron and I had just released a recording of "Everybody Knows About Me," our ME advocacy song, and I wanted advice on how to get it out into the world. I found his site, RESCIND (no longer online), and figured he'd be a good person to contact. He loved the song. He proposed hosting it on RESCIND to raise funds, which we did. He was so passionate and enthusiastic, despite the havoc his disease had wrought on his body, despite his anger at the indifference and scorn leveled at sufferers.
The last time I talked to him was a year ago, via Facebook. I linked him to a song I'd written recently, and he expressed his frustration about not being able to do more for the cause. He'd wanted to put a huge, big-name fundraising/awareness concert together, but he got into a car wreck before plans took off. He still had hope that he could make it happen if a couple of big names did more of the heavy lifting.
Now he's gone. Died by his own hand. It's stupid for me to be surprised, as this is a common cause of death for people with ME, but he seemed like one of those people who would fight forever. Live forever.
I wish his story had a happier ending. RIP, Tom.
* * *
I wanted to close this with a link to a charitable organization that funds ME research or ME awareness. Unfortunately, I don't know where Tom would have wanted the money to go. His obituary page lists two places where memorial contributions can be sent, but one of them is the CAA, and I know for damn sure he wouldn't want you giving them the time of day. If anybody has a better idea, please contact me at susan[at]cinderbridge.com or leave a comment.
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