Tuesday, October 1, 2013

Donations in Tom Hennessy's name

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 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.


Jill McLaughlin said...

Other than the Nightingale Foundation, these are not ME orgs. NAME is an online site that does not take donations. Or some call themselves ME (the latest scam) but are really about CFS or "ME/CFS." Even Invest in ME includes many fatigue researchers and changed the names or conference presentation titles to ME.

In Tom’s own words: "And if you want to find an accurate definition of Myalgic Encephalomyelitis, then google Byron Hyde, MD, of the Nightingale Foundation.

This is the antithesis of all these ME/CFS hybrid, blended terminology and mixed made up diagnoses.

Thanks to Lois for this cogent statement. "ME/CFS" groups have been claiming donation preferences, but Tom was always vehemently opposed to CFS. This statement and donations to the Nightingale Foundation would reflect much more accurately on his positions.

Personal agendas and misrepresentations of ones work is very disrespectful.

----From Lois Ventura, NAME:
We are honored to be mentioned in our friend Tom’s obituary. Tom's obituary designated National Alliance for Myalgic Encephalomyelitis, www.name-us.org , as a place folks can choose to make contributions in memory of one of our most stalwart advocates of ME & cfs Name and Definition issues. Since www.name-us.org is not a registered charitable organization and does not accept donations, we thought very hard about how best to honor our friend Tom's memory. Tom was known for his fearless advocacy on many fronts, but in the US and internationally, Tom is best known as the Founder of Awareness Day, May 12, Florence Nightingale's birthday. So in the spirit of Tom's own words quoted below, we ask that donations to Name-US.org in Tom's memory be directed to The Nightingale Research Foundation. (Links on www.name-us.org homepage.) In Tom’s own words: "And if you want to find an accurate definition of Myalgic Encephalomyelitis, then google Byron Hyde,MD, of the Nightingale Foundation. It was Byron who told me about Florence Nightingale. When I researched the history of our little Ms. Flo, she sounded like MANY of the nurses I have met with M.E. over the years. When I found out that her birthday was in the springtime in the northern hemisphere, and early autumn in the southern hemisphere, I said, 'We have found our day'." -Tom Hennessy You have found your day to be at peace, Tom. Lois Ventura

cinderkeys said...

I replied to this on Facebook, but NAME isn't the same thing as NAAME, the organization I linked to.

If you know of other organizations that you know Tom would have recommended, feel free to post them here.

Jill McLaughlin said...

Thanks Susan, but this is another fake ME group that is all about ME/CFS. Tom was very adamant about abandoning CFS. This group has all the canned, mixed messages and spin. Keeping CFS is simply ridiculous and dangerous to ME patients. ME/CFS is a Trojan horse. It is impossible to educate on ME as "ME/CFS."
There is no *legitimate* reason to include CFS or connect/combine them. No, "vee do not haff to," despite the reams of misinformation and propaganda spewed by these ME/CFS groups (CFIDS Assoc, Pandora, PR etc). ME is no more CFS than is MS, lupus etc.

So yes, Tom, it is way past time to get angry. ME/CFS only works for those with political agendas and works against patients. Suppose that's nothing new.