MDA Advocacy @MDA_Advocacy
MDA's Advocacy empowers the voice of the @MDAorg community & protects the interests of those we serve. mda.org/get-involved/m… Washington, D.C. Joined June 2009-
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Join @NASEM_Health this Sunday afternoon as they convene the #RareDisease community to discuss the future of newborn screening. Register here 👇 nationalacademies.org/event/42736_05…
#ICYMI: #MDA hosted our MDA #Advocacy Institute this week titled "The Power of Your #Vote." 🗳️ Here is the full recording of the webinar. Watch to learn more about how to get engaged as a voter and a discussion about the impact your vote can make: youtube.com/watch?v=my5szI…
@HHSGov @MDA_Advocacy #MDA has been highly involved during the public comment process to support the #neuromuscular disease community, and we are excited to see this work come to fruition.
@HHSGov @MDA_Advocacy Specifically, the rule supports banning biased treatment decisions and rejecting tools that devalue life based on disability, defines accessibility standards for web-based tools, adopts the U.S. Access Board's guidelines for diagnostic medical equipment, and much more.
BREAKING: Today’s finalization of @HHSGov’s rule to update section 504 of the Rehabilitation Act is a historic milestone for #DisabilityRights and marks the first update to the law in 50 years. Read more here: hhs.gov/about/news/202… @MDA_Advocacy
Happening in 1⃣ hour: #MDA #Advocacy Institute: The Power of Your #Vote 🗳️ - tonight's agenda: 🔹how our gov't works & its structure 🔹getting engaged as a voter 🔹#AccessTheVote campaign 📹 launch 🔴Register now: mdausa.webex.com/weblink/regist…
Happening in 1⃣ hour: #MDA #Advocacy Institute: The Power of Your #Vote 🗳️ - tonight's agenda: 🔹how our gov't works & its structure 🔹getting engaged as a voter 🔹#AccessTheVote campaign 📹 launch 🔴Register now: mdausa.webex.com/weblink/regist…
#MDA Advocacy was at today's @HouseCommerce hearing on improving and supporting access to Medicaid. Thanks to the Committee for providing the hearing as an opportunity to discuss ways to improve the #Medicaid program.
For people living with physical #disabilities, household tasks and chores can often present their own slew of challenges and barriers. These #SpringCleaning tips can make cleaning a more accessible, efficient, and independent experience all year long: mdaquest.org/accessible-spr…
We’re kicking off #ALSawarenessMonth with Ken Sutcliffe, retired Dallas Fire Fighter @DFFA58 & military veteran living with #ALS. Ken shares his story in our newly released PSA. Make a difference & help #EndALS today: MDA.org/EndALS Learn more: mda.org/press-releases…
Your Friday reminder to vote for #MDA's #AccessibleAirTravel ✈️ campaign - we're a finalist for a Shorty Award! Vote here: shortyawards.com/16th/accesible…
Your Friday reminder to vote for #MDA's #AccessibleAirTravel ✈️ campaign - we're a finalist for a Shorty Award! Vote here: shortyawards.com/16th/accesible…
Stay up-to-date on #NewbornScreening progress for #DMD and hear from experts @PMelmeyer, #MDA, Lauren Stanford, @ParentProjectMD, Annie Kennedy, @EveryLifeOrg, & Jill Castle, @LHF_EndDuchenne. Register today for the webinar on Friday, May 3 at 1pm ET: parentprojectmd-org.zoom.us/webinar/regist…
Note on "significant change" - includes "flights on different planes that are less accessible or accommodating to a person with a #disability." Passengers are entitled to a refund if their flight is canceled/significantly changed & they do not accept alt. trans./travel credits.
Note on "significant change" - includes "flights on different planes that are less accessible or accommodating to a person with a #disability." Passengers are entitled to a refund if their flight is canceled/significantly changed & they do not accept alt. trans./travel credits.
We’re in the final stretch of the @shortyawards & #MDA’s #AccessibleAirTravel campaign is a strong contender in the 'Call to Action' category. Just one week left to vote for us to receive the audience honor! Cast your vote here: shortyw.in/4aB6RYM @MDA_Advocacy @MindyHSpeaks
Join us for @MDA_Advocacy Institute: The Power of Your #Vote - 4/30 at 7pm ET. MDA Advocacy’s Shaun Hill & @LWV’s Chelsey Cartwright will discuss how gov’t works, ways to engage, & why your vote is so powerful for the #neuromuscular community. Register: mdausa.webex.com/weblink/regist…
@MDA_Advocacy Your #vote is your voice, and it’s time to make it heard! Ready to join us? Head to MDA.org/Vote.
Join #MDA as we launch our #AccessTheVote campaign, designed to help educate and empower the #neuromuscular disease community and the broader #disability community to participate in the electoral process this November. Learn more: mda.org/press-releases… @MDA_Advocacy
@StratElements @MindyHSpeaks @MDA_Advocacy Please raise your voice with us and VOTE for the Accessible Air Travel campaign by April 30th here: shortyawards.com/16th/accesible…
#MDA's #AccessibleAirTravel Campaign is a finalist for the Shorty Awards in the ‘Call to Action’ category! We want to thank @StratElements for their partnership and @MindyHSpeaks and Madison Lawson for sharing their air travel experience. mda.org/press-releases… @MDA_Advocacy
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
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.
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.
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 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.
No More Excuses ALS W.. @als_now
4K Followers 1K Following ALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow
alsHATER @HaterAls
1K Followers 968 Following als hater MM lover Impossible is an option One woman army
I’m Dying To Tell Y.. @LorrisPodcast
1K Followers 870 Following Midwest Momma & Wife. ALS Warrior for 20 years. Host of I’m Dying To Tell You Podcast. Living Faith Over Fear. Instagram: imdyingtotellyoupodcast
Nicole Cimbura @nicolecimbura
1K Followers 2K Following
Les Turner ALS Founda.. @LesTurnerALS
4K Followers 575 Following The leader in comprehensive #ALS care in Chicagoland
Nicole McCabe @NicoleALSJurney
2K Followers 650 Following 35 year old PNW girl battling #ALS I'm here to fight with all my might. My babies need me! We deserve a right to live. 💙 join me in my battle
axeALSFoundation @stevens_nation
4K Followers 634 Following On a mission to #axeALS Instagram: @teamstevensnation Facebook Group: Team Stevens Nation
Sarepta Therapeutics @Sarepta
5K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe
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 #IWriteALS
Farmstrong @farmstronginfo
1K Followers 4K Following Foodie, #wine-y, fan of good UX & #techcomm. Together we can save my husband & hundreds of thousands w/ #ALS. #EsriMaps #DyingWaiting #BLM #LGBTQIA #mirfanda
Deb Paust @PaustDeb
1K Followers 724 Following Blessed mom, lover of snow, I AM ALS Organizing Associate, old fashion enthusiast and trying to be the change I wish to see in the world. #GoodTrouble
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.
Julie Suarez @epjule
501 Followers 899 Following Wife, corgi mom, stepmother, aunt, baby sister, cousin, and friend determined to help beat #ALS. Army brat! Texan (kinda). #ALSWarrior #EPSTRONG #GEAUXTIGERS
TiffanyJessie @9l8muOJ3S493FEL
1 Followers 259 Following
Ilayda Ulgenalp @ilaydaulg
328 Followers 690 Following Pronounced as: ill-eye-da | health policy, advocacy, #cdnpoli and @f1 nerd | Constantly learning and unlearning | #EndALS
Rania Detzler @detzl_ra
87 Followers 5K Following
Evie-rose Acosta @AcoEvie
89 Followers 5K Following
Joni Anderson @iamjonianderson
588 Followers 2K Following
Serena Suggs @SugSeren
69 Followers 5K Following
Mayola Walat @may_wal
60 Followers 5K Following
Macey Pancake @MaceyPanca
81 Followers 5K Following
Children's Hospital A.. @hospitals4kids
15K Followers 2K Following We are the voice of over 200 children's hospitals.
kirubakaranpalaniyapp.. @kirubakaranpal1
0 Followers 21 Following
Betty’s Brigade Fou.. @No_More_ALS
348 Followers 530 Following We Are… the Betty’s Brigade Foundation ________ We Are… Fighting ALS Together _________________ - to raise ALS awareness & funding
Amaya Dillahunty @ama_dillahu
85 Followers 5K Following
Delores Koiner @DKoiner46119
88 Followers 5K Following
Alina Bertaina @bertai_al
8 Followers 3K Following
Shannon Wood @districtshannon
147 Followers 861 Following health advocate, rva to dc to rva. she/her. tweets my own, not my employer’s.
Georgios Georgiadis�.. @GeorgeGeorg86
2 Followers 124 Following Αγάπη για το σινεμά και τις ταινίες. Αγάπη για το ποδόσφαιρο και τον ΠΑΟΚ.
Monica Reid @ItsMonicaReid
1K Followers 3K Following Advocacy & Policy Strategist | Social Justice & Criminal Legal Reform Advocate | Plant Enthusiast | Senior Director of Advocacy @NACDL | thoughts my own
Daisie Koritko @KoritDai
52 Followers 5K Following
Heather Planas @HeatPlana
74 Followers 5K Following
Elidia Bolivar @EliBoliva
41 Followers 5K Following
Mila-rose Wesly @MilaWesly42266
69 Followers 5K Following
Emmeline Balderama @emmeline94050
43 Followers 5K Following
Peggy Girt @GirtPeggy86348
39 Followers 5K Following
RYAN LEVI WEDDLE @RYANLEVIWEDDLE
554 Followers 6K Following HELLO THERE MY NAME IS RYAN LEVI WEDDLE, I'AM A TECH SAVY ENTHUSIAST THAT LIKES FOOD, ANIMALS, DOGS AND GAMING, ETC.
Ayleen Timenez @TimenAyle
27 Followers 5K Following
Jessica G. @JessicaG2024
28 Followers 152 Following Bring him back home... Bring him back to power... Habakkuk 2:3 Hebrews 11:1
RAAM57 Residential @raam57rdc
50 Followers 272 Following Revitalizing the world we live in, one home at a time @raam57llc
RAAM57 @RAAM57llc
4 Followers 3 Following Residential Service & Supply Co. #EmbraceInnovation @raam57rdc
Blair Hathaway @hathaway_blair
9 Followers 771 Following
Anna Perng 彭安娜 @annaperng
2K Followers 2K Following She/her. Disabled daughter of immigrants & Mom. currently: White House. past: ACL. Obama Biden ‘08+Admin. @swarthmore alum. Views my own. RT not endorsements.
Abigail Smet (she/her.. @Abigail_EEC
84 Followers 437 Following Speaking for the 🌲🌲 in Sacramento | Climate and conservation policy advocate at @EEC_California
Angelic Ayles @ayl_angel
38 Followers 5K Following
Myasthenia Gravis Fou.. @MyastheniaOrg
2K Followers 296 Following #MyastheniaGravis Foundation of America (MGFA) is the largest nonprofit patient advocacy organization dedicated to improving the lives of people with #MG.
Crystal Brown @crystallbrown02
0 Followers 4 Following
aaron @shoaf33
134 Followers 2K Following hello my name is Aaron I enjoy helping people and I work on computer 3d printers and 3d modeling. thanks for checking out my bio
Darrick Boord @biggdbo
117 Followers 235 Following Christian, father, former journalist. Trying to hold on during a bumpy roller coaster ride.
Teaurky @teaurky73225
71 Followers 2K Following
Evidence Impact Labs @evidence4impact
65 Followers 460 Following We develop, evaluate and advocate for health policies, programs, and services that improve access and affordability to healthcare. Connect to learn more!
My Mobility Path @mymobilitypath
2 Followers 72 Following The Consumer Advocate in Accessible Transportation Call (888)460-3969 or visit https://t.co/C0N81S5fHD to book today!
Charleigh Demange @DemaCharleig
30 Followers 5K Following
Glendalee deRuiter @MGMdeRuiter77
26 Followers 63 Following
Amanda Kreiss @KreissAmanda
34 Followers 683 Following I stand by Truth and Reconciliation. #CeaseFireNOW
Zeldaru @OmarZeldaru
245 Followers 721 Following Ally to persons of varying gender expression. BLM, love is love, solidarity with the Palestinian people and others suffering. Pronouns: He/him
Tye Martin @dr_tyedmartin
1 Followers 489 Following Friendly neighborhood PhD with Muscular Dystrophy “driving” to increase recognition of humanness in the disabled & chronically ill community.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
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.
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.
Les Turner ALS Founda.. @LesTurnerALS
4K Followers 575 Following The leader in comprehensive #ALS care in Chicagoland
axeALSFoundation @stevens_nation
4K Followers 634 Following On a mission to #axeALS Instagram: @teamstevensnation Facebook Group: Team Stevens Nation
Andrea Pauls Backman .. @AndreaBackman05
2K Followers 1K Following ALS strategist, former CEO @lesturnerals, board member various ALS orgs. lost mom to ALS in 2010. passionate about people w ALS/MND & fighting for cures.
Team Gleason @TeamGleason
6K Followers 495 Following Nonprofit founded by former New Orleans Saints player, @SteveGleason, after his diagnosis with Amyotrophic Lateral Sclerosis (ALS) in 2011. NO WHITE FLAGS
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
LGMD Awareness Founda.. @LgmdAwareness
1K Followers 1K Following A 501(c)(3) advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as Limb-girdle muscular dystrophy (LGMD).
Sunny Brous @sunnystrongals
2K Followers 627 Following I have ALS but it does not have me. No apologies, no excuses, no regrets, just me.
Children's Hospital A.. @hospitals4kids
15K Followers 2K Following We are the voice of over 200 children's hospitals.
Shannon Wood @districtshannon
147 Followers 861 Following health advocate, rva to dc to rva. she/her. tweets my own, not my employer’s.
Lillianna Byington @lil_byington
2K Followers 2K Following Reporter for Bloomberg Government covering transportation @BGOV • 📧: [email protected] • Formerly @FoodDive, @News21, @gwhatchet, etc •
Women in Government R.. @WGRDC
3K Followers 511 Following Women in Government Relations (WGR) is one of the most respected non-profit, non-partisan government relations associations in the DC metro area. Founded 1975.
LEAH TWEETS @LeahJZelaya
31 Followers 37 Following ♿️MDA Ambassdor, 🩰 Dancer, Writer & 🎬Actress: Marry Me 💍, A Hero’s Grace , Tenacious Jaci, QuaranTime
MDA Let's Play @MDALetsPlay
499 Followers 248 Following The gaming team of @MDAorg, making #gaming more #accessible & #inclusive for people living with #musculardystrophy #ALS #neuromuscular diseases.
Alan Chaulet ♿✈ @AlanChaulet
1K Followers 5K Following @allwheelsup VP and Founding Board Member | @ParentProjectMD PAAC I #BentleyU Grad I DMD and Disability Advocate | All Views My Own |
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
National Academies @theNASEM
94K Followers 2K Following Non-partisan. Non-profit. Evidence-based advice on pressing issues from the official account of the National Academies of Sciences, Engineering, and Medicine.
United Spinal @UnitedSpinal
11K Followers 1K Following Empowering wheelchair users to live independent and authentic lives ♿️
Accessibility News @A11yNews
7K Followers 4K Following #A11y news, incl. #digital #accessibility trends, #tech, litigation | Weekly newsletter subscription: https://t.co/LWcchednMB
Disability Rights Edu.. @DREDF
21K Followers 2K Following DREDF is a leading national civil rights law and policy center directed by individuals with disabilities.
Senate Commerce, Scie.. @commercedems
4K Followers 2K Following Follow for official news and hearings of the U.S. Senate Commerce, Science, and Transportation Committee. Chaired by @SenatorCantwell RT≠Endorsement
Target ALS @TargetALS_fdn
2K Followers 525 Following Target ALS brings together the right people, funding, critical tools and resources to foster the creation of breakthrough therapies to treat people with ALS.
Steve Way @thesteveway
4K Followers 560 Following Actor. Comedian. Writer. Speaker. Very disabled. On @Hulu Ramy [email protected] https://t.co/Hlb6zRiGMn Speaking Inquiries: @collectivespkrs
CathyMcMorrisRodgers @cathymcmorris
54K Followers 5K Following Proudly serving Washington's beautiful 5th District in Congress. Pioneer. Trailblazer. Leader. Working Mom of Three. Wife. Ability Advocate. Trustbuilder.
OPMD Association Non-.. @OPMDadvocate
251 Followers 740 Following Advocates for Oculopharyngeal Muscular Dystrophy.
Disability Scoop @disabilityscoop
41K Followers 0 Following The Premier Source for Developmental Disability News
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Pompe Disease News @PompeNews
47 Followers 10 Following We are a free digital publication dedicated to sharing the latest news, research, and Pompe disease patient perspectives.
Nikki Diaz @nikabilities
101 Followers 202 Following Advocate, Writer, Songwriter & Cyber Security Student Cal State Long Beach
Michael Lewis @MichaelKLewis
118 Followers 133 Following Vice President of Policy at American Association of People with Disabilities (@AAPD). Proud Tar Heel, Chapel Hill native, and father of 5. Opinions are my own.
Jake Sherman @JakeSherman
438K Followers 4K Following Founder of @punchbowlnews. @nbcnews/@msnbc. Phish/Dead fan. Author of NYT best seller, “The Hill To Die On”.
John Morris | Wheelch.. @WCTravelOrg
9K Followers 1K Following Traveling the world with one hand, a passport & my power wheelchair. 2x FSU alumnus. UF MBA. Inclusion advocate. Catholic. ♿️ ✈️ [email protected]
MDDisabilities @MDDisabilities
3K Followers 1K Following
Emily Voorde @Voorde46
4K Followers 148 Following @WhiteHouse Office of Public Engagement Associate Director working with K-12 Educators, Disabled Americans, and Seniors. (she/her)
Maceo Carter @MaceoCarter
932 Followers 557 Following Father, Husband, UNC Tar heels Fan, Sibling, Living with ALS.
Kessler Foundation @KesslerFdn
6K Followers 3K Following Changing the lives of people with disabilities. Shares do not necessarily reflect the views of Kessler Foundation. #KesslerChangingLives • #ResearchThatLeads
Senate Aging Committe.. @SenateAging
2K Followers 270 Following News and information from the United States Senate Special Committee on Aging on behalf of Chairman @SenBobCasey.
The Arc of the United.. @TheArcUS
25K Followers 2K Following Working towards respect, dignity, and inclusion for all people with intellectual and developmental disabilities and their families.
U.S. Department of Ed.. @usedgov
1.4M Followers 210 Following The official United States Department of Education Twitter account. Follows, Retweets and shared links ≠ endorsement.
FDA Patient Affairs @FDAPatientinfo
4K Followers 108 Following The FDA's Patient Affairs office covers a range of FDA-specific topics and conducts numerous activities that are of interest to patients.
ACLgov @ACLgov
14K Followers 609 Following Official govt acct. Authenticate: https://t.co/IAFZ2Qzfjx. Following/being followed is not endorsement.
Amy Shinneman @AjsShin
47 Followers 81 Following
Neuromuscular Disease.. @CureHIBM
523 Followers 183 Following Mission: To enhance the quality of lives of those living w/ #GNEmyopathy (HIBM) through advocacy, education, outreach & funding research on treatments #CureHIBM
All Wheels Up ♿✈ @allwheelsup
5K Followers 5K Following Working to increase awareness for safer and more dignified accessible travel through research and advocacy. Text FLY to 707070 to Donate
Destroy Duchenne @destroydisease
533 Followers 127 Following Destroy Duchenne‘s mission is to Complete the Cure™ for Duchenne muscular dystrophy by advancing gene-editing and gene therapy technologies into human practice.
World Duchenne Awaren.. @DuchenneDay
2K Followers 885 Following Join us on September 7 on World Duchenne Awareness Day #WDAD2024. Help raise awareness for people living with dystrophinopathies!
HRSA @HRSAgov
40K Followers 232 Following The official government account of the Health Resources and Services Administration, an agency of @HHSgov. Authentication: https://t.co/abEVq8MjRu
FDA Medical Devices @FDADeviceInfo
100K Followers 432 Following Official FDA - device recalls, safety, approvals, radiation-emitting products. Contact us [email protected] or 800-638-2041 https://t.co/hfXZUjyrJx
Energy & Commerce Dem.. @EnergyCommerce
23K Followers 436 Following Official Twitter of the House Energy & Commerce Committee Democrats. Led by Ranking Member @FrankPallone.
National Disability R.. @NDRNadvocates
13K Followers 2K Following We are the national membership association for the congressionally mandated Protection & Advocacy Systems and Client Assistance Programs. #DisabilityRightsNewsThank you for your support @SenatorSinema!!#Accessabletravel #ALSAwareness
✈️Watch Live on the Senate Floor: Chair @SenatorCantwell, chief architect of the FAA Reauthorization Act of 2024, delivers remarks ahead of the vote to begin consideration of the legislation. x.com/i/broadcasts/1…
@MDAorg @PMelmeyer @MDA_Advocacy @CureCalpain3 is proud to be part of the Neuromuscular Advocacy Collaborative!
@MDAorg @PMelmeyer @MDA_Advocacy We are grateful for the invitation from MDA Advocacy!
#MDA’s @PMelmeyer & @MindyHSpeaks also had the pleasure of celebrating the Biden Administration’s proposed rule to improve #AccessibleAirTravel with Michelle Irwin, President of @allwheelsup, and @sophmorgTV and @KeelyCatWells, co-founders of @_MakingSpace_ Media. @MDA_Advocacy
When d ramp sup uses ur wheelchair as a teaching moment 4 all his team! Now, there's a great leader! @SouthwestAir give this fine gentleman a raise for the utmost respect with which he cared 4 my chair! And get him on ur training team! Great job all around! #WheelchairTravels
@NeenaNizar @SouthwestAir @MDA_Advocacy, look! Progress. #accessibility
In a new #NeuroVoices, Rita Sattler, PhD, MSc, of @BarrowNeuro, discussed several topics related to #ALS research and the emerging biomarkers in recent years ahead of the 2024 MDA Clinical and Scientific Conference. #MDA2024 @MDAorg 🎙️neurologylive.com/view/neurovoic…
Today, we're on Capitol Hill to urge lawmakers to support the ALS Better Care Act (HR 5663/S.3258). This legislation will enhance Medicare reimbursement for multidisciplinary clinics nationwide, improving care for people living with ALS. buff.ly/3uqlkan
Shout out to everyone who's working on this bill to help ensure our ability to travel safe in air @SenDuckworth @SenatorSinema !!! @MDAorg #EndALS
Today's Senate Commerce Committee (@commercedems) passage of #FAA reauthorization is a critical step towards making air travel more accessible for all passengers with #disabilities! Next, the bill must clear the full Senate and be signed by @POTUS. Stay tuned!
@MDA_Advocacy @FAANews I spoke with @SenDuckworth’s office yesterday in person about the FAA Reauthorization Act. She has been a huge champion of ensuring disability travel protections are included. #kickALS
@MDA_Advocacy @FAANews Just want to fly safely
Cure CMD is excited to be awarded a @MDAorg Advocacy Collaboration Grant! 🎉 This grant will help Cure CMD to continue to drive advocacy on issues important to our community. 📢 mda.org/press-releases…
Thank you @MDAorg for selecting Cure Rare Disease as a recipient of an Advocacy Collaboration Grant! Working with organizations that share a common purpose of getting treatments to patients is critical to creating a future where no patient is left behind. loom.ly/iRl4yME
We're grateful to be awarded this @MDAorg Advocacy Collaboration Grant that has the potential to aid not only #vcpdisease #ibmpfd, but a broad range of #RareDisease through innovative #clinicaltrials design with @nationwidekids @EmmesCRO
NEWS: #MDA has announced the seven recipients of the #Advocacy Collaboration Grants set to launch projects that will drive vital policy change and empower the development of strong advocacy networks. mda.org/press-releases…
"She reminds me of a cat... everybody always says cats have nine lives, I can attest to it." 🫶 #Chiefs RB Clyde Edwards-Helaire on how his younger sister Maddee has inspired him. Maddee was born with muscular dystrophy. @MDAorg @Clydro_22 @heykayadams | #ChiefsKingdom
Our Founder and President, Michele Erwin was recognized by Conde Nest Traveller as one of the 14 people making the world more accessible for 2024. We are so proud of all the hard work and dedication she has put towards making air travel accessible. Link to the article in our bio.
Thank you to our 2023 Global Forum sponsors for supporting our mission of increasing awareness for safer and more dignified accessible air travel through research and advocacy! We could not do this without you.
Congratulations to #MDA #QuestMedia Editor-In-Chief @MindyHSpeaks for receiving the 2023 Henry Viscardi Achievement Award. Learn more about Mindy’s achievements: viscardicenter.org/2023-henry-vis… @ViscardiCenter
We recently had a conversation with @MichaelKLewis at #AANEM about the future possibility of having an aircraft that accommodates patients with #neuromuscular disorders who use mobility devices. @AANEMorg @MDAorg @MDA_Advocacy Check it out here: neurologylive.com/view/economics…
With Congress in recess for the holidays, #MDA is still working alongside partners such as @TSA on #AccessibleAirTravel 🛫 & upcoming @FAANews reauthorization. We're continuing the fight! As always, you can join us at: votervoice.net/MDA/Campaigns/…
NEWS: @MDA_Advocacy is celebrating the partnership between @MDAorg & @TSA as we work together to ensure the safety, comfort, and dignity of travelers living w/ #NMD & #disabilities that affect mobility. Read more about this #AccessibleAirTravel ✈️ news & #TSA resources 👇:
Today we announced our partnership with @TSA to establish training for TSA officers focused on interactions with travelers living with #neuromuscular disease and other #disabilities affecting their mobility. Learn more: mda.org/press-releases… #AccessibleAirTravel @MDA_Advocacy
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