Top Tweets for #DelayIsDamage
Re-sharing my previous post that shows #therealhd and what progression can look like in #huntingtonsdisease. While our disease progresses slower than some others like #ALS, #TimeMatters because #DelayIsDamage to the brain. That damage is irreversible, just as it is in other neurodegenerative #rarediseases. Because our disease in particular is 100% genetic and I am gene-positive, I currently know what my future holds if no cure is found. That's why treatments like #AMT130 and #votoplam matter so much to us - because it buys some of us like myself time we currently don't have. This is why we should #ActWithUrgency.
@US_FDA @FDA_KyleD @KerriHT @houmanhemmati @FDACBER @Help4HDI @HDYOFeed @WhiteHouse @SenRonJohnson @SenRickScott @SenGillibrand @SenateAging @adamfeuerstein @Christina4HD @rachelreising96 @JRenz0418 @hthurgood
For some visual context - here's a video of me and my dad dancing in 2017. The photos are 4 years later right before he passed away in January 2021. This is what progression of #huntingtonsdisease looks like. This is why a sham surgery is unethical in a #raredisease like HD. This is why we cannot wait. #TimeMatters and it's running out for us.
@BeckyQuick @SenRonJohnson @SenRickScott @SenGillibrand @WhiteHouse @realDonaldTrump
What an incredible message from the CEO of @Help4HDI to the @US_FDA for #HDAwarenessMonth! PLEASE take the time to watch this video and share it. It's time that @FDACBER #ActWithUrgency because there are #HDLivesOnTheLine and #DelayIsDamage that is irreversible. In #huntingtonsdisease, as well as other #rarediseases like ALS, DMD, and Hunter Syndrome, #TimeMatters #ProgressionDoesntPause #TimeLostCantBeRecovered
#DelayStealsTime
Congress also needs to hold FDA Commissioner @DrMakaryFDA, @VPrasadMDMPH and others accountable for their corruption - not just moving the goalposts on multiple rare disease treatments and reversing guidance already provided, but also the public ridicule of @uniQure_NV and the Huntington’s community. That would be the best way to help us this HD Awareness Month.
So please - share this video. Contact your Senators and Representatives and bring what's going on to their attention. Ask WHY nothing has been done yet to address the ongoing concerns and corruption within the FDA, and ask them to do the 3 things Katie Jackson mentioned in this video. That's how you can help us this month.
@SenateAging @SenGillibrand @SenRonJohnson @SenTedCruz @SenRickScott @SenTedBuddNC @SenThomTillis @RepAuchincloss @realDonaldTrump @WhiteHouse @BeckyQuick @adamfeuerstein @Christina4HD @rachelreising96 @JRenz0418 @houmanhemmati @hthurgood @GraceCarnathan @CommonSense3241 @DanielleValenti @HDYOFeed
@l_e_whyte @peter_mantas
This is what progression looks like.
This is why time matters.
This is why delays are devastating.
#DelayIsDamage #DelayStealsTime #TimeLostCantBeRecovered (4)
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