Rob Saupe'

I love God. I enjoy sharing my
experiences of God at work with others.
God is good. God is great.
For what he does next,
I can hardly wait. R.S. 2009

[Rob Saupe' @RobSaupe]

@US_FDA
@DrCaliff_FDA @FDA_Drug_Info
Is my Rare disease community being held hostage by @ClinuvelNews pharmaceuticals? Can a pharma company dictate who can and can't get an fda approved drug? Won't work with our Porphyria Experts who are our lifeline.
Continued below 👇

[Ginger Gonsalves @GingerGonsalves]

“Never, ever be afraid to make some noise and get in good trouble, necessary trouble”
~Rep John Lewis (1940-2020) 💜

[Rob Saupe' @RobSaupe]

@DiscMedicine https://t.co/kd1srfgyVj

[Rob Saupe' @RobSaupe]

@michaelnicollsx @elonmusk @FCC Will it bring down the cost of roaming unlimited data?
That's the only thing holding me back from getting the starlink mini. My dog and I travel in our van.

[Rob Saupe' @RobSaupe]

@Kenny_Wallace @KPCharityRide Glad to see you're getting the entire ride in this year. And how about Kim? She sure looks like she's having a great time. Ride on Herm!

[Rob Saupe' @RobSaupe]

@ShadowJumpers_
@UnitedPorphAssc

[Rob Saupe' @RobSaupe]

@VictoryJunction @Kenny_Wallace @KPCharityRide @BassProShops My EPP (porphyria) family came together for 45 photosensitive kids @VictoryJunction last weekend.
Thank you all for helping make it possible!
The camp experience together changes these kids lives forever.

[Rob Saupe' @RobSaupe]

@VictoryJunction @Kenny_Wallace @KPCharityRide @BassProShops My EPP (porphyria) family came together for 45 photosensitive kids @VictoryJunction last weekend.
Thank you all for helping make it possible!
The camp experience together changes these kids lives forever.

[Rob Saupe' @RobSaupe]

@markmartin @Kenny_Wallace Had you been more kind back in the early 2000s I may have stayed a fan of yours. Your behavior at the restaraunt (Hunters) in Post Falls idaho you showed your true self. Who you were then. Glad to see you now see the importance of kindness. We can all grow and improve.

[Rob Saupe' @RobSaupe]

I'm actually surprised that @ClinuvelNews CLVLY stock prices haven't dropped even more.

With the loss of so many EPPers as customers due to the compassionate use of a new, better, and potentially more affordable treatment what's keeping them a float?

https://t.co/vEGm7zuM3z

[Rob Saupe' @RobSaupe]

@MatthewWielicki How much $ and impact to the land did it cost to capture this "free energy"?

[Rob Saupe' @RobSaupe]

@wideawake_media @MatthewWielicki Just to get one blade transported it is on an over sized load that requires pulit cars. The fuel alone to get the entire wind mill to the site cost more $ than power generated. Ridiculous.

[Rob Saupe' @RobSaupe]

@SpaceX @elonmusk @Starlink February launch.
View from Quartsite Arizona.

[Rob Saupe' @RobSaupe]

@elonmusk Be sure to take an expert along to test and count the gold.

[Rob Saupe' @RobSaupe]

@ClinuvelNews Are you all working to improve the effectiveness of Scenesse yet?
How about the overwhelming cost?
$100,000+ for up to 60 days of effectiveness?
treatments are working their way through the system that are much more effective and easier to use for EPPers than Scenesse.

[Rob Saupe' @RobSaupe]

@tokingalex Oh my.... bless your heart.

[Rob Saupe' @RobSaupe]

@CountsKustoms @DannyCountKoker @CountsKustoms_S I'll be there this weekend! Yeah baby! Been dreaming about seeing the collection in person for a long time. I would love to meet the Count @DannyCountKoker.
I have porphyria (my type is EPP) the rare genetic "Vampire disease".
Maybe a "rare" opportunity for both of us. 🧛‍♂️

[Rob Saupe' @RobSaupe]

@maria_avdv Understanding and agreeing are 2 different things.

[Rob Saupe' @RobSaupe]

@UhpSala @MatthewWielicki You're a smart one.
Couldn't be because he's actually from Poland. Could it? 🤦‍♂️

[Rob Saupe' @RobSaupe]

@ClinuvelNews Global authority on photomedicine? If so, why are so many that recieve Scenesse aren't getting that great of results? In fact, many are saying they think they aren't receiving the full dose. So many follow ups y'all have failed to do. But, you've got big stars on the payroll now.

[Rob Saupe' @RobSaupe]

@Kenny_Wallace @VictoryJunction https://t.co/WTbuHjgjFo

[Rob Saupe' @RobSaupe]

@Kenny_Wallace @VictoryJunction Thank you, Kenny. My Porphyria community was @VictoryJunction last weekend for the kids. https://t.co/BLj6Wf557w

[Rob Saupe' @RobSaupe]

@wartranslated Look at that. You're actually beginning to understand what democracy and freedom of speech is. There's extremists on both sides. The majority of Americans are wise enough to decipher the truth. Unlike soviet style, everyone has a voice.