Robert James Howes

Gen X. Australian. Creative. Emo.

[Rob Howes @RJ_Howes]

“You’ll take the job, clean the stables? Go backwards, go forwards, do whatever is necessary? It’s your generation, after all. Your legacy.” John Le Carré, Tinker, Tailor, Soldier, Spy. https://t.co/0dDKMcs2xm

[Robert James Howes @R_J_Howes]

Sometimes a metaphor is just a metaphor. Sometimes a spoon is just a spoon. But allegory can exist even if there was no intent to be allegorical.
https://t.co/fpQ0WiDdXw

[Robert James Howes @R_J_Howes]

What Sgt Peppers Lonely Hearts Club Band would look like if @thebeatles came from Moscow instead of Liverpool.

[Robert James Howes @R_J_Howes]

"Drug targeting" is Orwellian Doublespeak. #ShowerThoughts

[Robert James Howes @R_J_Howes]

I had no desire to be a founder of a patient nonprofit. It's just not my skill set. I had already moved mountains in the past, had already achieved the impossible, and helped create something from absolutely nothing in 2005. https://t.co/ETDOuOh2ao

[Robert James Howes @R_J_Howes]

'If anyone on LinkedIn reads my article, it will be inprivate mode cos they don't wanna give me even one genuine impression'. https://t.co/PVvYZpNF7g

[Robert James Howes @R_J_Howes]

Toward an artificial Intelligence Forensic Transparency Engine for Hidradenitis Suppurativa: F.E.T.I.S.H.

https://t.co/tABZ0D6bC9

[Robert James Howes @R_J_Howes]

Moral of the story is, if a nonprofit is going to astroturf, make sure the pharma funder is onboard with internal marketing only.😂 https://t.co/6oLsCSClHY

[Robert James Howes @R_J_Howes]

Some rare diseases live on a planet where grass grows in opposite directions, where its roots begin in the stratosphere and its leaves stretching but never ever entering the Earth’s crust.

[Robert James Howes @R_J_Howes]

At the bottom of their humblebrag is an invitation to share the news. Which I did, on Twitter/X and Facebook, with frequency. 🤣🤣 https://t.co/6oLsCSClHY

[Rob Howes @RJ_Howes]

https://t.co/0dDKMcs2xm

The Hidradenitis Suppurativa Research Community is diminished when it forgets the people with disease and disability who built it.

[Rob Howes @RJ_Howes]

https://t.co/rXHabfgxVM

Thank you, Michelle Barlow, United States, for:
-showing people with HS have no limits
-showing that people with HS-led research has value
-for co-founding the Hidradenitis Suppurativa Foundation, Inc, San Diego, EIN: 20-3246772 21 years ago
-for being the founding President of the Hidradenitis Suppurativa Foundation, Inc, San Diego, EIN: 20-3246772, 21 years ago
-for putting HS on the National Institutes of Health research agenda 17 years ago
-for being a pioneer, a leader, a partner & friend.

[Rob Howes @RJ_Howes]

https://t.co/DdTSze84Qi

2007. The HSF Inc. San Diego, Resolution on HS to the US Congress. Resolution is signed by Michelle Barlow, founding President of the HSF. 'Proposed resolution for a national Hidradenitis Suppurativa Awareness Month.

[Rob Howes @RJ_Howes]

https://t.co/Rh1xfh4XqX
2009 HSF Inc. (San Diego) Second International Hidradenitis Suppurativa Research Symposium
Part-funded by the NIH. Funding awarded to Michelle Barlow, San Diego.

"Both Michelle and I felt it was of extreme importance that the US government step up and play a part in the (HSF San Diego) mission & goals. It was not public relations. It was public health, and it was public justice." RjH

"People with HS have an inherent dignity and inalienable rights. People with HS have both the right to and need of, freedom, justice and peace." RjH

[Rob Howes @RJ_Howes]

https://t.co/ALUF1GELtG
"If you think in terms of a year, plant a seed;
if in terms of ten years, plant trees;
if in terms of 100 years, teach the people."

[Rob Howes @RJ_Howes]

“To diagnose hidradenitis one first and foremost has to think of it.” In 2001, Dr Jan von der Werth had expressed one of the most important observations about HS in the 21st century. https://t.co/iXWQH9x3V5 #pwhs #NotPharma

I paraphrased it.
*With awareness, diagnosis of Hidradenitis Suppurativa becomes possible.
*With HS Awareness, diagnosis is possible.
*Think of HS. Diagnose HS.

[Rob Howes @RJ_Howes]

If I had to choose a favourite, it would be The Lost Years. Never written anything before or since with utter vulnerability. The blog hive link- cos now the jobs done, social media engagement is meaningless to me. https://t.co/fl6eh0jKTz

[Rob Howes @RJ_Howes]

https://t.co/ANz3WvEZS3

The blog hive. Archiving the good, the bad, the mediocre, the well-intended, the spurious, the funny, the irony, the joy & the horror.

[Robert James Howes @R_J_Howes]

you are not alone