Wife, corgi mom, stepmother, aunt, baby sister, cousin, and friend determined to help beat #ALS. Army brat! Texan (kinda). #ALSWarrior #EPSTRONG #GEAUXTIGERS
Joined March 2009
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Julie Suarez retweeted
#ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It causes muscle weakness and wasting, and eventually leads to death. There is no cure for ALS, but there are treatments that can help slow the progression of the disease.
May is ALS Awareness Month, and we are asking everyone to join us in raising awareness about this devastating disease. You can help by sharing this post, donating to ALS research, or volunteering your time to an ALS organization.
Together, we can make a difference in the fight against ALS. #bard #teamshaunyboy #endals #putmeincoach
#ALS #ALSAwarenessMonth Please donate to @iamalsorg #fistbumps4ALS @asortarican @clebeaux @sandrawmarlowe @Showtyme_33 #ElPaso – at El Paso, TX
Need everyone on this 🙏🙏
#ALS
#fistbumps4ALS
@GetUpESPN
@stephenasmith
#charlesbarkley
@JalenHurts
@bryceharper3
@JoelEmbiid
Lots of gratitude from me, too!! #NurOwn @FDACBER @DrCaliff_FDA
A disease that is 100% fatal is about to become treatable for 2% of #ALS patients. The other 98% will be treatable after the #NurOwn type 2 error is remediated. Huge Gratitude to #FDACBER & @DrCaliff_FDA for listening to patients & making the right call on regulatory flexibility.
Thank you, the SOD1 families and the Legislative team for all the work in getting this approved!
Dear @US_FDA, @DrCaliff_FDA, @FDACDERDirector, today is the day the ALS community holds their breath, waiting in nervous anticipation on your word for #Tofersen. Please give the #SOD1 community a chance to live & thrive with their disease by #EndTheLegacyApproveTofersen #RWE
The first patient dosing through EAP is happening! This EAP is made possible through #Act4ALS. Grateful to @RepClayHiggins and all the members of Congress that passed this landmark legislation. @epjule
There is living proof that #tofersenworks @US_FDA
Almost 4 years into a 6-12 month life expectancy, Chris is here making memories with us on family vacations because #TofersenWorks.
@US_FDA, #ApproveTofersen.
One kick ass #ALS Warrior
Thank you for including me with the amazing women of @iamalsorg @clebeaux @asortarican – at El Paso, TX
Julie’s bright, fun personality makes you feel like you’re at a party even if you’re just in her presence. Life may be different for her after being diagnosed with #ALS, but not her outlook on it: “head up, and never give up HOPE!” You give US hope, Julie!
#WomensHistoryMonth
Keep on kicking ass and calling out blatant mistruths! #ALSsucks #DyingWaiting
Tofersen is keeping so many of our friends alive and could have saved so many more lives if there was more access @ChrisSnowCGY @kelsieswrites @sairysays @conniembecker @CEHaddadNP @BridgetRebecca4 @LisaLegacy4ALS @Mayuri_Saxena
We are honored to stand with the SOD1 community.
Julie Suarez retweeted
Julie Suarez retweeted
March is #WomensHistoryMonth, and women are making history within the ALS movement every day. We want to introduce you to a small handful of them over the next few weeks. Stay tuned!
Julie Suarez retweeted
“I could’ve chosen to focus on what it stole from us or what it challenged us with, but instead, I chose to focus on how it strengthened our love, sense of family, and gave us courage.” Gia, you ARE a beacon! We are honored to have you in the ALS movement with us. #EndALS
Julie Suarez retweeted
If you can tune in for this As Com on #Tofersen, do. @iamalsorg is hosting a viewing party, making it easy for you to participate. If this life-giving therapy is approved for those with the SOD1 gene, this will be a game changer for all in the ALS community! #EndALS
The Advisory Committee meeting about #Tofersen will take place on March 22. I AM ALS is hosting a watch party so we can experience this important event together. Sign up to join us and see a rough outline of the day’s schedule here: iamals.org/action/tofersen-a…
Julie Suarez retweeted
#Tofersen is the first treatment to specifically target SOD1 ALS, a particularly aggressive form of familial ALS. What is familial ALS? Learn more through this resource from ALS News Today. alsnewstoday.com/forms-of-al…
Julie Suarez retweeted
Mindy carries the C9 gene for familial ALS, but that's just one part of her story. She's also a writer, a mom, and an avid player of word games of all kinds. She's on a mission to change the landscape for familial #ALS families. You go, Mindy! #WomensHistoryMonth
Julie Suarez retweeted
Why should the FDA approve #Tofersen?
- New data shows a clinically meaningful benefit in individuals living with SOD1-ALS
- Data suggests a lower risk of death or PV (permanent ventilation) when Tofersen is initiated earlier in treatment.
Source: nejm.org/doi/full/10.1056/NE…
