Deb Bellina retweeted
In 2002, I spoke at an ALS event in DC. After my talk, a patient said to me, "I'll be dead in a year. Please help make a cure possible." I promised that I would. And I intend to keep that promise. ir.brainstorm-cell.com/index…
Deb Bellina retweeted
Replying to @GillianHSapia
The Govt entrusted Navy pilot with $50 million jet and lives of crew members but don’t believe him when he says #NurOwn works for #ALS. @SecKennedy @DrMakaryFDA @realDonaldTrump , #ALS patients have been #DyingWaiting 10+ yrs. Let’s get er done! accessnewswire.com/newsroom/…
Deb Bellina retweeted
A Neurologist and a Mom Join Forces: the Real-World Evidence in the Fight for NurOwn's Approval for People with ALS accessnewswire.com/newsroom/…
PLEASE SHARE this compelling testimonial from Kade's neurologist Dr. Danielle Geraldi-Samara who provided her expert opinion that the #NurOwn stem cell therapy helped Kade breathe better and live longer.
Kade was diagnosed with 100% terminal #ALS at just 21 years old. Kade received 3 doses of NurOwn in the P3 trial in 2019. But he couldn't get more than 3 doses because it wasn't yet approved by the @US_FDA.
Tragically Kade died waiting on August 4, 2024.
Despite her unfathomable grief, Kade's mother filed a legal document with @FDACBER called a Citizens' Petition. She and other families are asking the FDA to approve NurOwn so no other family has to watch a loved one die when they know NurOwn could help them live.
#LivingProof #NurownWorks #stemcells
#ALS #ALSawareness #EndALS #Neurology #MND
@realDonaldTrump @SecKennedy @DrMakaryFDA
@VPrasadMDMPH @WhiteHouse @HouseGOP @SenateGOP @SenBillCassidy @SenJohnBarrasso @LeaderJohnThune @SenMullin @SenatorLankford @TomColeOK04 @RepAndyHarrisMD @RepJohnJoyce @RepGusBilirakis @DorisMatsui @SenAmyKlobuchar @SenatorLBR @RepSchakowsky @rosadelauro
$BCLI @BrainstormCell @TeamGleason
@HopOnACure @RealEricDane @LiveLikeLou4
@ALSUnitedCT @ComCareALS @youralsnetwork
@ALSofGNY @ALSUnitedChi @ALSunitedOhio @ALSUnitedRI @HarkALSHope @LesTurnerALS @DrOzdinler @HeimanPatterson
Deb Bellina retweeted
A Neurologist and a Mom Join Forces: the Real-World Evidence in the Fight for NurOwn's Approval for People with ALS accessnewswire.com/newsroom/…
Deb Bellina retweeted
Encore: Ep.1677: Hope Givers Ep.1678: Memoirs of an Academic - The Kathryn Zox Show - iVoox - goo.gl/alerts/avxKay #GoogleAlerts Thank you to the @kathrynzoxshow for this interview and for sharing HOPE!
Deb Bellina retweeted
We’re in LA! We attended the ESPN Humanitarian dinner last night, and we’ll be at the ESPY award ceremony tonight. I’m getting to spend time with my family, and some of my favorite people from high school, NFL, and the ALS journey.
To receive the Arthur Ashe award for Courage is profoundly humbling. In our culture, courage is often thought of as outward, public bravado. Raising one’s fist on the podium. Arthur shows us a different path that inspires, and motivates me.
Arthur Ashe was a sports champion, more importantly, he was a champion for humanity. A champion for life, and love.
My speech tonight is titled, The Courage to Love.
See you soon!
Deb Bellina retweeted
A speech that will touch people’s hearts for years to come ❤️
Steve Gleason delivered a memorable moment while accepting the Arthur Ashe Award for Courage at the 2024 ESPYS.
Deb Bellina retweeted
In this episode, former Alabama & NFL player, Kerry Goode talks about one of the most difficult parts of having ALS, losing the ability to speak. This is his first interview with using his eyes to type & using his computer voice. Listen in: podcasts.apple.com/us/podcas… @KerryGoode
Deb Bellina retweeted
An inspiring conversation with @jodonnellames who turned tragedy into purpose after losing her husband to ALS. Jodi shares how she found hope through caregiving, and finding others going through similar circumstances in her new book called Hope Givers.
radio.foxnews.com/2024/07/07…
Deb Bellina retweeted
ALS drugs: FDA expanded access program slow in helping patients
Please read and share this well written explanation of what is happening in ALS land with EAP problems by @BrielmaierL , #ALS #ENDALS @NINDSdirector @alsassociation statnews.com/2024/07/05/als-…
Deb Bellina retweeted
Why does Juan fight to #EndALS?
Because he is a force of nature (and watch out for hurricane Meg.)
#FridayMorning @iamalsorg #NiagaraFalls #TheOneandOnly 🌻
Deb Bellina retweeted
Congrats to @SteveGleason, who will receive the Arthur Ashe Award for Courage at the @ESPYS!
#Saints | #NoWhiteFlags
Deb Bellina retweeted
Please join me today for a tweetorial on how previous fatal diseases became chronic and treatable through incremental steps, many times with initial therapies providing modest benefits: 1/2
1. HIV/AIDS
•Initial Treatments: The first antiretroviral drugs, such as AZT (zidovudine) introduced in the late 1980s, provided modest benefits, primarily extending life by a few months.
•Incremental Improvements: The development of more effective antiretroviral therapies (ART) in the 1990s, particularly combination therapies known as HAART (highly active antiretroviral therapy), dramatically improved survival and quality of life.
•Current Status: With modern ART, HIV is now considered a chronic, manageable condition, allowing individuals to live near-normal lifespans with proper adherence to treatment.
WHY NOT ALS?
2. Chronic Myeloid Leukemia (CML)
•Initial Treatments: Before targeted therapies, treatments included chemotherapy and bone marrow transplants, which had limited success and high risk.
•Incremental Improvements: The introduction of the tyrosine kinase inhibitor (TKI) imatinib (Gleevec) in the early 2000s was a breakthrough, leading to significant increases in survival rates.
•Current Status: Subsequent TKIs, such as dasatinib and nilotinib, have further improved outcomes, making CML a chronic condition for many patients with sustained treatment.
WHY NOT ALS?
3. Hepatitis C
•Initial Treatments: Early treatments included interferon and ribavirin, which had low cure rates and severe side effects.
•Incremental Improvements: The development of direct-acting antivirals (DAAs) like sofosbuvir and ledipasvir in the 2010s greatly improved cure rates and reduced side effects.
•Current Status: Hepatitis C is now often curable with a short course of DAAs, transforming it from a potentially fatal disease to one that is effectively treatable.
WHY NOT ALS?
@ALSMNDMamaBears
@BellinaDeb
@KandySimons @klink52
@BridgetRebecca4 @plainJaniexx
@Shines2017 @mattwoman
@ginaGib68993499 @makerisafer
@mustangshellyd
@Smithstrongmom1
@TheRevDrLeslie @nicolecimbura
@FarberStacy
@BartBaker @HaterAls @als_now
@aVoice4ALS @sabrevaya
@bsw5020 @limpbroozkit @HerALSStory
Deb Bellina retweeted
Meet Rebecca Andrews, RN, a Care Coordinator at Synapticure. Inspired by her experience with familial ALS, Rebecca is dedicated to helping patients manage neurodegenerative diseases, knowing firsthand how to provide the care you need.
Learn more at synapticure.com.
this is a great opportunity to learn more about eyegaze technology. this is the key to ongoing communication and advocacy for people living with ALS who can lo longer speak/type!
Part 2 of the Write Stuff's Eyegaze panel is TONIGHT at 6:30pm ET! If you've ever been curious to learn more about the ins and outs of Eyegaze technology, this is the perfect opportunity. Sign up to join: iamals.org/action/eyegaze-pa…
this is an excellent tool.
The amazing Clinical Trials Team maintains an incredible dashboard of ALS clinical trials and observational studies. You can filter by geographic location, phase of the trial, time since symptom onset, and more. Check it out: iamals.org/get-help/als-sign…























