Pat Dolan @Team_Thriving
Mapper who is Striving to be Thriving with #ALS Author of the ALS Geospatial Hub - https://t.co/Po3Z3KCvuS #nohandsmapping bit.ly/ALSHub Joined May 2018-
Tweets636
-
Followers950
-
Following1K
-
Likes2K
Recognize this guy with hair, one of the top players in history of Colorado high school hoops?
If you live in #NewJersey please become an #ALS advocate. Learn more about your Legislators here arcg.is/1OX8a82 @farmstronginfo @glen_rouse @springsteen
If you live in #NewJersey please become an #ALS advocate. Learn more about your Legislators here arcg.is/1OX8a82 @farmstronginfo @glen_rouse @springsteen https://t.co/e2xMqbkIwl
If you read about a failed drug trial please get that this is what that news feels like to families dying from these diseases. We are the faces of grief and suffering behind those headlines.
@Team_Thriving @KRob8753 @farmstronginfo @RunningMama0522 @boaflouncer @teamthriving In Basel it was interesting that clinic leaders were most interested and enthusiastic about the poster & the info it showed them... yet I don't think they ask patients to complete it. "Not invented here" syndrome again? I'll stop now. Thanks for listening. 7/end
In December, we presented the insights from the #ALS Clinic Advisor surveys. Only 36% of clinics educate their patients on clinical trials! Do you agree? Please add a comment to let us know. esriurl.com/alshubposter @farmstronginfo @RunningMama0522 @alsadvocacy @boaflouncer
Hey there, I have created a Substack blog to talk about products and technology for people living with ALS! I have been trying to think about a way to talk about products that help me stay sane and produce something useful. I would love it if you would join and offer suggestions!…
I am so honoured to share my story. Let's #Fight2EndALS ♥️ @iamalsorg @bsw5020 @sabrevaya @SantiagoWeek13 @ObispoSouth
I am so honoured to share my story. Let's #Fight2EndALS ♥️ @iamalsorg @bsw5020 @sabrevaya @SantiagoWeek13 @ObispoSouth
An amazing man.
You can help make the FDA therapy review process more transparent. Contact your elected officials about the BENEFIT Act, which will require the FDA to disclose how or if they use patient experience data during the approval process. iamals.org/action/benefit…
When I was first diagnosed I looked back at my life and asked myself was that what caused it?
Promising Pathways Act Pick your state in the Map to see your Senators' support for PPA. If they say no, be sure to ask why and ask if they would meet with you and an @iamalsorg member. arcg.is/1rm8ii @Troy_W_Fields @glen_rouse @PaustDeb @ClareDurrett @farmstronginfo
Due to popular demand from our community, we're excited to host a special edition of Community Conversations in December. Join us as we discuss the various ways that the ALS community can actively contribute to advancing research! als.net/als-tdi-commun…
@Team_Thriving @alsadvocacy Looking forward to putting your survey data to work as we build out our trials tool that’s coming soon. You’ve collected some very valuable info.
Thank you Cathy @alsadvocacy & Jack Silva for presenting the poster & insights on clinical trials education. I love my clinic because they have amazing team of experts helping me maintain a high quality of life. But we also need clinics to educate us on the latest trials.
Thank you Cathy @alsadvocacy & Jack Silva for presenting the poster & insights on clinical trials education. I love my clinic because they have amazing team of experts helping me maintain a high quality of life. But we also need clinics to educate us on the latest trials.
It was an early wake up call. Big thanks to @outer_spatial getting up at 2am with me to help answer questions about the Locator. Thanks Amanda Stanko!
It was an early wake up call. Big thanks to @outer_spatial getting up at 2am with me to help answer questions about the Locator. Thanks Amanda Stanko!
Pat Dolan & Sandy Morris developed this survey to asks the questions people with #ALS want answered when they decide what clinic to attend. If you haven't filled it out, I encougage you to do so. If you are newly diagnosed, check out the reviews about clinics, doctors & support…
Pat Dolan & Sandy Morris developed this survey to asks the questions people with #ALS want answered when they decide what clinic to attend. If you haven't filled it out, I encougage you to do so. If you are newly diagnosed, check out the reviews about clinics, doctors & support…
Pat Dolan @Team_Thriving and the @R1_Crew are adding clinic surveys to their #ALS clinics locator tool. The goal is to improve patient care and experiences and help families choose clinics. Fill out the survey at survey123.arcgis.com/share/370b98c9…
Made this map and hundreds of others with just my eyes. Thanks to @TeamGleason #GivingTuesday to teamgleason.org/donate/ #ALS #GIS #EndALS #Geospatial #Esri @ClareDurrett
@sandrawmarlowe We are so very sorry for your loss. Sandra always had a kind, wise thing to offer on Twitter. We are grateful for her advocacy. RIP.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
AZ Latina ☮️🌊�.. @aVoice4ALS
4K Followers 5K Following Political Junkie. Advocate for Enviro Justice, Foster Care, Gun Safety, DEI, Amyloidosis, PD, ALS & Rare Diseases. Love LA Sports. I block disrespectful people.
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Seth Poling @SethPoling10
5K Followers 392 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
ALS Uncensored 🏴�.. @ScottsFight
2K Followers 1K Following Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 909 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Mandi @RunningMama0522
2K Followers 1K Following
Grant W Smith @GWSmith14
1K Followers 1K Following MUFC ! Proud Husband, Dad and GrandDad. Diagnosed with ALS in October 2020, I battle the BEAST everyday. #ENDALS #ALSLife
Dr. Nadia Sethi @nadia_sethi
2K Followers 2K Following Director, Community Outreach and Engagement at ALS TDI. ALS we are coming for you. Widowed by ALS and still fighting it. Views expressed here are my own.
ALS ACCESS @brainmatters10
2K Followers 2K Following Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
Rosia Pasquini @pasqu_ro
65 Followers 5K Following
Laila Linkous @LailaLinko88663
45 Followers 5K Following
Marhta Niverson @MarhtNivers
79 Followers 5K Following
Joe @JoePhils14
354 Followers 5K Following
Criselda Ofer @CriseldaOf1169
72 Followers 5K Following
Rosalind Aydin @AydinRosali
100 Followers 5K Following
Xuan Dozer @XuDozer
80 Followers 5K Following
Bianca Varrato @BiancaVarr984
66 Followers 5K Following
Julie Suarez @epjjule
5 Followers 187 Following Wife,corgi mom,stepmother,aunt,baby sister,cousin and friend determined to help beat #ALS.Army brat! Texan (kinda).#ALSWarrior #EPSTRONG #GEAUXTIGERS
Julia Carwin @CarwJu
90 Followers 5K Following
Caridad Traunfeld @CaridaTraunfel
58 Followers 5K Following
Celestine Marrone @CelestiMarro
47 Followers 5K Following
Marvis Ring @marvis_ri
44 Followers 5K Following
Jana Cothran @j_cothr
35 Followers 5K Following
David Ali @davidiali
359 Followers 407 Following MND advocate and supporter and working towards a world free from ALS/MND. Views/RT my own
Willetta Matheny @MathenWillet
28 Followers 4K Following
Anum Vibbert @AnVibbe
35 Followers 5K Following
Marget Schiefen @schief_marg
46 Followers 5K Following
Janelle Nesslein @JanelNesslei
71 Followers 5K Following
Irena Ribas @rib_ire
32 Followers 5K Following
Alaya Ketzler @AlayaKetzl49026
70 Followers 5K Following
Addison Herrero @AddisonHer46303
77 Followers 5K Following
Cleopatra Mcsparin @CMcsparin55393
53 Followers 5K Following
Scarlett-rose Kuhar @SKuhar9707
64 Followers 5K Following
Miriam Maldonado @MiriMaldona
40 Followers 5K Following
Candra Mckewen @MckeCan
17 Followers 3K Following
Lesa Ogando @LesaOgando75317
67 Followers 5K Following
Iris Osmers @osme_ir
74 Followers 5K Following
Petronila Mcgowen @PetroniMcgow
42 Followers 5K Following
Dusty Hipwell @DustHipwe
91 Followers 5K Following
Farrah Vallette @vallet_far
63 Followers 5K Following
Alice Bethoney @ABethoney44941
42 Followers 5K Following
meghan buco @BucoMeghan
30 Followers 112 Following
Anne Chen @AnneChenNeeNee
10 Followers 125 Following Active life, career, cheerful and optimistic personality
Kathy @Kathy7483672148
105 Followers 435 Following Married to the love of my life who is dying from 100% Fatal ALS,mama, grandmama, full time caregiver. Counting everyday with my hubby as a blessing. #ALSsucks
Nieves Rushdan @NievesR46907
21 Followers 3K Following
Shala Judon @jud_shal
31 Followers 5K Following
Catharine Casada @CatharinCasa
46 Followers 5K Following
Kerstin Jung @KerstinJung6
39 Followers 101 Following PhD candidate in Nanomedicine / Science, Medicine & Pharma industry Enthusiast / Bio Tech Investor
C Lewis @cml86
2 Followers 2K Following
Pamila Salsa @PamilaSals84338
37 Followers 5K Following
Chuck McDowell @CharlesMcDsr628
884 Followers 4K Following Plumber /played in a rock band 80's and 90's love to have fun and do some crazy stuff
Dr H @hjls73
701 Followers 1K Following Access & heritage leader: was Cabinet Office Access champion, Trustee @mndassoc now vol @MNDNorthWilts @alzheimerssoc MHFA FRSA Clore Social Fellow #TeamLH VMO
RKUK2USA @ros_klein
63 Followers 242 Following
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
AZ Latina ☮️🌊�.. @aVoice4ALS
4K Followers 5K Following Political Junkie. Advocate for Enviro Justice, Foster Care, Gun Safety, DEI, Amyloidosis, PD, ALS & Rare Diseases. Love LA Sports. I block disrespectful people.
I AM ALS @iamalsorg
26K Followers 799 Following I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on ALS.
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Sarah Nauser @SarahNauser
12K Followers 516 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
Seth Poling @SethPoling10
5K Followers 392 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
ALS TX DAD @AlsDads
2K Followers 894 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
ALS Uncensored 🏴�.. @ScottsFight
2K Followers 1K Following Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 909 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Mandi @RunningMama0522
2K Followers 1K Following
Grant W Smith @GWSmith14
1K Followers 1K Following MUFC ! Proud Husband, Dad and GrandDad. Diagnosed with ALS in October 2020, I battle the BEAST everyday. #ENDALS #ALSLife
MND Fylde & Wyre Grou.. @MNDfylde_wyre
216 Followers 215 Following Volunteers working in support of the Motor Neurone Disease Association in the Fylde and Wyre area.
Dr H @hjls73
701 Followers 1K Following Access & heritage leader: was Cabinet Office Access champion, Trustee @mndassoc now vol @MNDNorthWilts @alzheimerssoc MHFA FRSA Clore Social Fellow #TeamLH VMO
Anne Holden @lilybetholden
845 Followers 2K Following Raising awareness of MND in memory of our dad, counsellor, volunteer @neurodropin, suicide prevention, end of life care, bereavement
alsnorthcarolina @alsncchapter
1K Followers 651 Following The ALS Association North Carolina Chapter is now ALS United North Carolina. Same mission, same services, and the same great staff, with a new name.
Sen. James Lankford @SenatorLankford
139K Followers 816 Following Check out my solution to stop Government Shutdowns: https://t.co/0Vw30gc15p
MND-SMART @mndsmart
1K Followers 989 Following Innovative UK MND clinical trial from Euan MacDonald Centre for MND research at @EdinburghUni. Designed alongside people with MND. Searching for new treatments.
Martin Johnston @MartinJ_MND
2K Followers 568 Following Diagnosed with Motor Neurone Disease in August 2018. Trying to raise awareness of the condition in the hope a cure can be found. Also @MJ_No9 🏴
MNDA Northern Ireland @MNDA_NI
2K Followers 2K Following 💙Raising awareness 🧡Supporting people with MND in NI ➡️FB: https://t.co/L8xEK0v5zV ➡️JustGiving:https://t.co/wX1lQPM1Qf #mndani Reg Charity No. 294354
Michael Campbell @ObispoSouth
122 Followers 255 Following 'Life is What Happens To You While You're Busy Making Other Plans.' John Lennon #EndALS #Fight2EndALS
MND NE Wales @MNDNEWales
577 Followers 210 Following MND North East Wales Branch, volunteers working in support of the MND Association.
It Is What It Is @WishingforCure
299 Followers 380 Following I have ALS. Tulane Grad. MBA, studied Law at Tulane & Harvard. Partner in PHA LLC, Oceanside, Ca. Distributor of Ji Wu Li https://t.co/EVfP4R1Y04
Rachel Brown @MND_CommsAids
235 Followers 223 Following MND Association Communication Aids Coordinator. All views are my own
CAL FIRE/Riverside Co.. @CALFIRERRU
103K Followers 653 Following Official Incident and Safety Message Site for CAL FIRE and Riverside County Fire Department. This page is not monitored. Call 9-1-1 for emergencies.
Elin Adcock @elin_adcock
86 Followers 263 Following An ALS/FTD advocate and a vintage VW enthusiast, I am here to amplify voices, support caregivers, change healthcare policies and hoping to #endALS #fight2endALS
Sussex MND Network @SussexMND
348 Followers 293 Following Sussex Motor Neurone Disease Care & Research Network. Brighton & Sussex Medical School. Working with @UHSussex & @mndassoc to improve care for PABMND in Sussex
My MND Mates @MyMNDMates
43 Followers 105 Following An online community for those living with MND/ALS. We’re passionate in raising vital awareness of those diagnosed in the younger generations.
Michael Wilson @MichaelWheelson
125 Followers 257 Following Husband and Dad. Mechanical Engineer. Jedi in Training, but still can't master art of itching my own face. ALS'ing since Feb. 2017.
geospatial @geospatial
878 Followers 454 Following Maker of maps, lover of geography, designer of information & dataviz, and life-long computing geek.
GivingTuesday @GivingTuesday
85K Followers 3K Following From a viral hashtag to a global movement, #GivingTuesday is reimagining a world built upon shared humanity and generosity.
MaryHahnWard @MaryHahnWard
582 Followers 739 Following Caregiver to my husband w/ALS dx 2010, Photographer, Writer. Elizabeth Dole Fellow.
Jennie Starkey @StarkeyJennie
480 Followers 320 Following Mum of 4, educator, PhD student, diagnosed with MND Sept 2021. recently retired. Raising MND awareness through humour (sometimes dark) with my blog.
Helen Mackie @MND @HelenMackieMND1
225 Followers 257 Following #MND Association Regional Fundraiser South West; helping the amazing people fighting against MND & fundraising in the South West. Views my own #proudfundraiser
Thomas L. Friedman @tomfriedman
923K Followers 57 Following NY Times columnist and Pulitzer Prize winning author of Lexus and the Olive Tree and From Beirut to Jerusalem.
David Brooks @nytdavidbrooks
255K Followers 1K Following Op-Ed columnist, @nytopinion. Author of The Road to Character, The Social Animal, and Bobos in Paradise.
EndTheLegacy @End_The_Legacy
327 Followers 65 Following Patient led organization providing education and support , and advocating for, those impacted by Genetic ALS and FTD.
Jonathan Brent M.D., .. @DrJBrent
277 Followers 1K Following
Senator Laphonza Butl.. @Senlaphonza
8K Followers 150 Following Official Government Account of Senator Laphonza Butler. CA Senator. Mother to Nylah. Partner to Neneki. HBCU graduate. Labor organizer. Believer.
Chris Scandaglia @ChrisScandaglia
955 Followers 5K Following https://t.co/VTII0I4qsa President, in memory my grandfather where I have worked w AROD&CANO other NYY raised $10310 ALS widow, $4612 ALS widower & $2505 for ALS widow.
Sue Sutter @PinkSheetSutter
3K Followers 478 Following Senior Editor, Citeline's Pink Sheet, covering US FDA drug and biologic regulation and approvals. Views are my own. @PharmaPinkSheet
AnneeK @anneek10s
376 Followers 457 Following God is bigger than #ALS, dx in 2022, Married to the love of my life, Mom and Grammy, Golden retriever lover #bourbonlover #FightlikeAGirl #ALS #ALSWarrior
KUPOCARE @KUPOCARE
631 Followers 2K Following We are passionate about providing innovative mounting solutions to people with disabilities. We offer tutorials on utilizing AI tools to enhance #accessibility.
Juan Fernandez @NewsJuan
6K Followers 1K Following Emmy winning KCAL News Anchor. 28 years serving this great community. (1996-2024) Instagram: NewsJuan - Facebook: TheNewsJuan 📺🎙
KCAL News Assignment .. @KCBSKCALDesk
64K Followers 3K Following The Assignment Desk at @kcalnews and CBS News Los Angeles 📧: [email protected] #KCALNews
Angelo Di Carlo @angdicarlo
10K Followers 1K Following Lily’s Dad, Molly’s husband & son of Sicilian immigrants Sports & Sales at @46sports and @PulseFM. Previously: WNDU & Redeemer Radio.
NEUROLOGY @Neurology
3K Followers 235 Following Sharing new innovations from the frontiers of neurology #neurotwitter 🧠 Get “Neurology in a Nutshell”, a children’s book explaining neurology to kids 👇
Kerstin Jung @KerstinJung6
39 Followers 101 Following PhD candidate in Nanomedicine / Science, Medicine & Pharma industry Enthusiast / Bio Tech Investor
Jeremy Wright @inertcatnip
914 Followers 595 Following Product Engineer, Esri -- opinions are my own, not my employer's.
Ken M @kjmark
130 Followers 689 Following Chiefs, Yankees and golf fan. Hoping ALS patients get access to needed treatments.
Shelley Baumgartner @6baums
86 Followers 276 Following Army Veteran, Nurse Practitioner, Wife, Mother of 4, Patriot!
Robin @mamalowy
479 Followers 497 Following We are all travelers in this worldEnjoy the journey..Be kind to those you meet along the way. Tree lover, bird watcher, cat rescuer🌈🏳️🌈🌞🌝🌻🌳🐈🇺🇸🇮🇱
TeamJacobWV @TeamJacobWV
806 Followers 307 Following Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
Bruce Virgo @BVirgo1
434 Followers 295 Following Aussie #MND #ALS Warrior now living in Scotland. Retired Maritime/Shipping lawyer (non-practising - Australia, England/Wales & Scotland).
Ajay Sampat, MD @Sampat_md
475 Followers 37 Following Father, husband, son, and brother. Clinical educator and neurologist. Person living with ALS.
Jimmy Carter Presiden.. @CarterLibrary
93K Followers 190 Following The official Twitter account of the Jimmy Carter Presidential Library and Museum, operated by the National Archives and Records Administration
Geoff @Gebinh1
15K Followers 13K Following MND WARRIOR. diagnosed with motor Neurone Disease Did love street food.😢 But loves to travel. Takeing one day with my amazing wife at time . SURPORTS NHS.
Pope Francis is set to preside at the celebration of Holy Mass for the Solemnities of the Ascension, Pentecost, and the Most Holy Trinity, with the latter also being observed as the first World Day of Children. Read more: loom.ly/6tqlh9Y
Recognize this guy with hair, one of the top players in history of Colorado high school hoops?
Hey advocates! Know anyone in NJ? Please share.👇 @annemcintosh241 @melissamaria510 @Troy_W_Fields @glen_rouse @rett_may @JackSil24 @LisaLegacy4ALS @Team_Thriving @nicolecimbura @tptobin
Calling New Jerseyans! We are getting down to the wire and need your help to make sure ACT for ALS gets fully funded for FY25. If you live in any of the districts indicated on this map, please sign up to be a constituent here: iamals.org/action/help-th…
@sabrevaya Grieve all what you have to Sandra. Sending love to you and Brian💙💚🤍 #anticipatorygriefhurts #Iknow!
If you read about a failed drug trial please get that this is what that news feels like to families dying from these diseases. We are the faces of grief and suffering behind those headlines.
#Vikings Kirk Cousins shows he is 4 months post-op & already lookin ready for Mini-Camp. PS: If this was Aaron Rodgers the world would be talking about how miraculous his surgery was & how he heals like “Wolverine” I know Cousins is a Spartan but he has some WOLVERINE in him.
@KRob8753 @Team_Thriving @farmstronginfo @RunningMama0522 @alsadvocacy @boaflouncer CT are important to some not all PLWALS. The purpose of the survey is to gather PLWALS & their caregivers opinions about all clinics on a wide range of topcs from parking and accesibility, to neurologist, speech therapy, RT, support services by local ALSA and many other things…
@ScottsFight @alsassociation Scott, check at @Team_Thriving work …ospatial-hub-nonprofit.hub.arcgis.com. It doesn’t directly address your question but does/will provide insights for clinics on what pALS think they do well and where they could grow.
@Team_Thriving @farmstronginfo @RunningMama0522 @alsadvocacy @boaflouncer Being offered information about clinical trials and how one can participate if you desire to is a moral imperative. Not everyone wants to, but participation is impossible if no one tells you how Taking the Clinic Advisor Survey helps highlight the importance of Clinical Trials
@ScottsFight @Team_Thriving @farmstronginfo @RunningMama0522 @alsadvocacy @boaflouncer At UC Davis MD ALS clinic I was told PLWALS can be discouraged if a trial they're in doesn't read out positively. True for sure for some. Equally discouraging; being unable to participate because you no longer fit inclusion criteria bc you've had symptoms too long. @UCDavisPMR
Thanks to everyone who braved the rainy weather last night to come to the talk about the @Synod_va with Carol Costello at @LoyolaMarymount! And thanks to all who bought books and stopped to chat afterward. Great to meet you all!
Thanks to all at @LACongress who came to my talk on Jesus's outreach to those on the margins. Whether LGBTQ people or any group treated as "other," we are meant to welcome them with "respect, compassion and sensitivity." Thank you also for sharing your beautiful stories.
Gospel: Today Jesus gives us the litmus test for entry into heaven: helping those in need (Mt 25). When we help those in need -- the poor, the sick, the hungry, the thirsty, the stranger, those in prison -- we help Jesus. When we do not help those in need, we do not help Jesus.
@outer_spatial @Team_Thriving @farmstronginfo @RunningMama0522 @boaflouncer If you go to the "classic view" there is (was) actually a crude but helpful map. nationalgeographic.com/travel/article…
Tell me the Chiefs winning back 2 back SB’s and John Elway handing them the trophy was a nightmare
@alsadvocacy @Team_Thriving @farmstronginfo @RunningMama0522 @boaflouncer @teamthriving I don’t disagree with either Cathy or Pat. In fact, the processing issue is why I do not think an in-depth trial discussion is appropriate at dx visit, or even the first multi-d visit after dx. I believe the most important thing at the first visit is good baseline from all.
I'm continually baffled that for a disease that has eluded so many for so long, the Forced Death Authority insists any potential therapy fit in such a tightly defined box. @FDACBER @DrCaliff_FDA #NurOwnworks
#ALS is an extremely heterogeneous disease, yet studies often lump us together using “mean” & “median” values for analysis. This is like saying all Toyotas get the same MPG regardless of model & year. We need more precision in ALS so a Prius doesn’t get compared to a 4Runner.
@Team_Thriving @farmstronginfo @RunningMama0522 @alsadvocacy @boaflouncer How many ALS clinics are in the US? How many are not certified?
@Team_Thriving @farmstronginfo @RunningMama0522 @alsadvocacy @boaflouncer With 159 clinics included compared to the density of trials in the U.S. at select sites, 36% actually feels high, especially before 2024 when care navigation became covered by CMS. Speaks to the work clinics do and also the work to be done.
@ArrestALSNow @alsadvocacy @Team_Thriving @KRob8753 @farmstronginfo @RunningMama0522 @boaflouncer @iamalsorg @sabrevaya @bsw5020 I can’t agree more. Excellent. Non profits can learn a lot about business practices altho I know they don’t have funds or expertise. But your idea makes me think of successful businesses that have focused end to end customer service. Not passing buck. It woudnt be easy but doable
Trends for United States
You might like
