Rob Howes

2005 co-founder HSF Inc., San Diego, that NGO no longer lives.
I-Human. Not pharma.
Hasten Hidradenitis Suppurativa Research NOW!
Speed = Distance / Time

[Rob Howes @RJ_Howes]

Blogging since 2016 about #HidradenitisSuppurativa on Google+, Facebook, Twitter & Substack. Style is variable, experimental, unusual, aberrant & sui generis. Substack documents my evolution into a dissident advocate, a satirist dismantling the 'HS Complex'. #PWHS #NotPharma

[Rob Howes @RJ_Howes]

@ozzy_mora 💜

[Rob Howes @RJ_Howes]

1/5
“HS is not rare, it’s rarely talked about” timeline.
From 2018 to 2022, I (as a #pwHS) started tweeting/posting versions of this exact idea on X because HS is common but massively under-recognised. From 2022 I published a version to Substack. Full archive of my original statements here:
https://t.co/9fAhj0L9rE

[Rob Howes @RJ_Howes]

2/5
June 25, 2024: HS Connect @HSConnectOrg files a trademark application for the exact phrase
“HS ISN’T RARE, JUST RARELY TALKED ABOUT”
(U.S. Serial No. 98615580) Full USPTO record (live):
https://t.co/vDKpub99O9

[Rob Howes @RJ_Howes]

3/5
April 8, 2025 → Trademark officially registered on the Principal Register.Current Owner: HS Connect (Corporation, organised in Washington) (and friends)
has been using the near-identical slogan in their public awareness campaigns since at least 2023.
Image: screenshot @HSConnectOrg youtube video: interview with @hsforg Doctor

[Rob Howes @RJ_Howes]

@HSConnectOrg 4/5
This is my story, told with public records only.
Nothing stops any of us from speaking our truth.

https://t.co/74Cz7TIkxw

[Rob Howes @RJ_Howes]

@HSConnectOrg 5/5
Companion US HS medical & patient nonprofits @hsforg @hopeforhs @theahsid are you happy for a HS NGO to treat people with HS in this manner?
Are you all good with this?

#HSisnotrare #HidradenitisSuppurativa #pwHS
https://t.co/Uq4gi0zrM3

[Rob Howes @RJ_Howes]

@HSConnectOrg @hsforg @hopeforhs @theahsid Story: timeline - by THINKER, SAILOR, JOKER, WRY.
https://t.co/29rXUXYvk3

[Rob Howes @RJ_Howes]

@HSConnectOrg @hsforg @hopeforhs @theahsid

[Rob Howes @RJ_Howes]

@HSConnectOrg @hsforg @hopeforhs @theahsid 'tagging' @ILDSDerm @GlobalGhisa

[Rob Howes @RJ_Howes]

@HSConnectOrg @hsforg @hopeforhs @theahsid @ILDSDerm @GlobalGhisa @Novartis @ grok helped me draft posts one to five. (Optional disclosure). TY Grok.

[Rob Howes @RJ_Howes]

https://t.co/mga3JHjjIK

Published on Substack 30 November 2023, about 15 months before said trademark officially registered on the Principal Register: Owner, HS Connect.

Page is an archive of some tweets made to Twitter from my accounts, 2017 to 2023. I deleted those accounts 2018/19. #pwHS #NotPharma #HidradenitisSuppurativa

[Rob Howes @RJ_Howes]

https://t.co/mga3JHjjIK
Published on Substack 30 November 2023, well before the above-described, ill-advised, application to the @uspto

The first tweet I made in 2017 is on this page. At the time I also used that self-quote as an email signature:

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

I don't care about copyright infringement. I care about HS nonprofits infringing upon my human rights. I care about nonprofits infringing upon other #pwHS human rights. Do you care? (Addressing those I @ mentioned).

#pwHS #NotPharma #HidradenitisSuppurativa

[Rob Howes @RJ_Howes]

typo: deleted those accounts 2024/5. Letting typo stand in thread

[Rob Howes @RJ_Howes]

https://t.co/mga3JHjjIK

Published on Substack 30 November 2023, about 15 months before said trademark officially registered on the Principal Register: Owner, HS Connect.

Page is an archive of some tweets made to Twitter from my accounts, 2017 to 2023. I deleted those accounts 2018/19. #pwHS #NotPharma #HidradenitisSuppurativa

[Rob Howes @RJ_Howes]

@HSConnectOrg @hsforg @hopeforhs @theahsid @ILDSDerm @GlobalGhisa tagging @Novartis

[Rob Howes @RJ_Howes]

https://t.co/uFLsni1CSP

[Rob Howes @RJ_Howes]

It was the perfect storm,
one person alone at first,
seeking empathy & info.
Then hundreds. They found
each other, community
enabled via technology.

These HS communities began and
rose simultaneously on sea & land
for the internet, of course,
is simply global discourse.

Their doctor's advice was
to just live with it.
Reflect on that.
Pain, suffering, trauma?
'She'll be right mate;
just live with it. Forever.'

In Tony Blair's UK, many found Andy. 👇

#PWHS #HidradenitisSuppurativa #NotPharma

[Rob Howes @RJ_Howes]

Andy Dann née Davies, United Kingdom. A University of Surrey Medical Microbiology graduate. People with HS come from all walks of life. One thing they commonly share is healthcare neglect. These #pwHS are my heroes. The first public health advocates for #HidradenitisSuppurativa.

[Rob Howes @RJ_Howes]

Courageous by any measure. #pwHS like Andy strode into the void & told their story. Her quiet, sometimes stoic bravery rewarded a thousand-fold as #pwHS all around the world reached out to her. #HidradenitisSuppurativa https://t.co/3YPGklT5SM

[Rob Howes @RJ_Howes]

https://t.co/bqX8j7sR36 #pwHS #NotPharma

'Mike, Ejay, Andy and Norlei are heros and heroines in my book. They stood there alone under banner headlines drawing attention to their "boils" or with graphic pictures of their armpits for all the world to see.' H.I.D.E International 2001 (co-founded by Sylvia Shawcross). #HidradenitisSuppurativa

[Rob Howes @RJ_Howes]

https://t.co/mga3JHjjIK
Published on Substack 30 November 2023, well before the above-described, ill-advised, application to the @uspto

The first tweet I made in 2017 is on this page. At the time I also used that self-quote as an email signature:

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

I don't care about copyright infringement. I care about HS nonprofits infringing upon my human rights. I care about nonprofits infringing upon other #pwHS human rights. Do you care? (Addressing those I @ mentioned).

#pwHS #NotPharma #HidradenitisSuppurativa

[Rob Howes @RJ_Howes]

1/5
“HS is not rare, it’s rarely talked about” timeline.
From 2018 to 2022, I (as a #pwHS) started tweeting/posting versions of this exact idea on X because HS is common but massively under-recognised. From 2022 I published a version to Substack. Full archive of my original statements here:
https://t.co/9fAhj0L9rE

[Rob Howes @RJ_Howes]

https://t.co/mga3JHjjIK

Published on Substack 30 November 2023, about 15 months before said trademark officially registered on the Principal Register: Owner, HS Connect.

Page is an archive of some tweets made to Twitter from my accounts, 2017 to 2023. I deleted those accounts 2018/19. #pwHS #NotPharma #HidradenitisSuppurativa