Paul Melmeyer @PMelmeyer
VP of Public Policy & Advocacy at the Muscular Dystrophy Association (@MDAOrg) and Pittsburgh native and sports enthusiast. Opinions are my own. He/him Washington, DC Joined March 2018-
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Tomorrow! Joined by Chelsea Cartwright of the League of Women Voters and @hammconsulting, we’ll discuss the impacts your vote has on the choices of our government. Please join us and get pumped to get more involved this election cycle!
Tomorrow! Joined by Chelsea Cartwright of the League of Women Voters and @hammconsulting, we’ll discuss the impacts your vote has on the choices of our government. Please join us and get pumped to get more involved this election cycle!
Our #AccessTheVote campaign is aimed not only at ensuring voting is #accessible for our community, but also ensuring our community is educated and informed. Won’t you join us? mda.org/vote.
Our #AccessTheVote campaign is aimed not only at ensuring voting is #accessible for our community, but also ensuring our community is educated and informed. Won’t you join us? mda.org/vote.
Well isn’t this exciting! Please consider voting for us!
Well isn’t this exciting! Please consider voting for us!
Just another reminder of the epic policy and public health failure that has been Medicaid unwinding. @JoeBiden should be doing more. @CMSGov should be doing more. States must be doing more. Everyone is responsible for this dumpster fire.
And we’ll be talking all about it Thursday evening at 7pm ET. Please join us! mdausa.webex.com/weblink/regist…
And we’ll be talking all about it Thursday evening at 7pm ET. Please join us! mdausa.webex.com/weblink/regist…
No details yet, but this could be BIG for the NeuroMuscular disease community. It’s no secret that the innovative drugs approved for NMDs are incredibly expensive. This proposal would cap patient costs at $2000 a year, saving them a lot of money. Very exciting!
No details yet, but this could be BIG for the NeuroMuscular disease community. It’s no secret that the innovative drugs approved for NMDs are incredibly expensive. This proposal would cap patient costs at $2000 a year, saving them a lot of money. Very exciting!
What an amazing NeuroMuscular Advocacy Collaborative meeting at another fantastic #MDAConference. Get ready: 2024 is a big year in policy and advocacy for NMDs and the people in this picture will be leading the way.
What an amazing NeuroMuscular Advocacy Collaborative meeting at another fantastic #MDAConference. Get ready: 2024 is a big year in policy and advocacy for NMDs and the people in this picture will be leading the way.
Well this was a ton of fun! Thank you to the @WhiteHouse for giving me the chance to underscore the importance of #newbornscreening, genetic testing, and more.
Well this was a ton of fun! Thank you to the @WhiteHouse for giving me the chance to underscore the importance of #newbornscreening, genetic testing, and more.
"ICC for muscular dystrophy (MDCC) has been around for 20+ years. Having many federal agencies, advocacy orgs and community members at the table has led to progress on policy and treatments" Paul Melmeyer #RareDC2024
I’m excited to be joining @EveryLifeOrg and @RareAdvocates tomorrow at their Rare Disease Legislative Conference to discuss the #MuscularDystrophy Coordinating Committee! The #RareDisease community can learn a lot from the successes of the MDCC, I’m looking forward to it!
I’m excited to be joining @EveryLifeOrg and @RareAdvocates tomorrow at their Rare Disease Legislative Conference to discuss the #MuscularDystrophy Coordinating Committee! The #RareDisease community can learn a lot from the successes of the MDCC, I’m looking forward to it!
Thank you @janschakowsky for leading the way! Our bill will model how adequate coverage and reimbursement for #ALS multidisciplinary care truly makes a difference. And this model will hopefully fuel change across all Neuromuscular diseases! Let’s get it passed!
Thank you @janschakowsky for leading the way! Our bill will model how adequate coverage and reimbursement for #ALS multidisciplinary care truly makes a difference. And this model will hopefully fuel change across all Neuromuscular diseases! Let’s get it passed!
Remember all those #accessibility provisions in the FAA Reauth I have been mentioning? Well we will go through every single one on Thursday evening! Plus further plans for 2024. Please join us!
Remember all those #accessibility provisions in the FAA Reauth I have been mentioning? Well we will go through every single one on Thursday evening! Plus further plans for 2024. Please join us!
NEW: #FDA has released its final guidance for industry regarding human #GeneTherapy products incorporating human genome editing. Read the full guidance document for more information. bit.ly/4b8sfW5
Excited that this bill passed the House last week! We don’t agree with how it’s paid for, but hopefully we can sort that out in the Senate. Stay tuned for more!
Excited that this bill passed the House last week! We don’t agree with how it’s paid for, but hopefully we can sort that out in the Senate. Stay tuned for more!
One of the many reasons @MDAorg supports @NIH and @ncats_nih_gov so strongly is because of efforts like these: The Bespoke Gene Therapy Consortium is moving the entire gene therapy field forward. And it could not come at a more important time.
One of the many reasons @MDAorg supports @NIH and @ncats_nih_gov so strongly is because of efforts like these: The Bespoke Gene Therapy Consortium is moving the entire gene therapy field forward. And it could not come at a more important time.
Thank you @SenDuckworth for leading the way! #ICYMI, on Thursday, a suite of air travel accessibility provisions passed the Senate Committee on Commerce and will hopefully be fully enacted in the upcoming weeks. Stay tuned for more detail and ways to get involved.
Thank you @SenDuckworth for leading the way! #ICYMI, on Thursday, a suite of air travel accessibility provisions passed the Senate Committee on Commerce and will hopefully be fully enacted in the upcoming weeks. Stay tuned for more detail and ways to get involved.
Woooo it’s finally happening! 🥳 Stay tuned with us at @MDA_Advocacy for all the developments for #AccessibleAirTravel. Hopefully we’ll have a lot of good news to share tomorrow.
Woooo it’s finally happening! 🥳 Stay tuned with us at @MDA_Advocacy for all the developments for #AccessibleAirTravel. Hopefully we’ll have a lot of good news to share tomorrow.
Fingers crossed and nothing official yet, but…. We might finally have movement on the FAA reauth and ALL the #accessibility provisions within. Stay tuned for more later this week!
Fingers crossed and nothing official yet, but…. We might finally have movement on the FAA reauth and ALL the #accessibility provisions within. Stay tuned for more later this week!
Already Ohio, Minnesota, and New York are set to newborn screen for #Duchenne this year. For everyone else, it’s a matter of when, not if, thus forever changing the landscape of Duchenne. And we can’t wait.
Already Ohio, Minnesota, and New York are set to newborn screen for #Duchenne this year. For everyone else, it’s a matter of when, not if, thus forever changing the landscape of Duchenne. And we can’t wait.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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
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.
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.
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.
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.
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.
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
Shah Minokadeh, M.D. @MinoShah
4K Followers 732 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
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 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
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.
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.
Jean C9orf72 @Jeanc9orf72
1K Followers 858 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
alsHATER @HaterAls
1K Followers 968 Following als hater MM lover Impossible is an option One woman army
Nicole Cimbura @nicolecimbura
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LaritaMiah @LaritaMiah96247
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Gracie Formichelli @GFormichel64756
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Raye Bonin @BoninRaye93149
81 Followers 5K Following
Marta Knezevic @MarKnezev
68 Followers 5K Following
Collene Yalon @CYalon97290
92 Followers 5K Following
Ella Chugg @chug_el
58 Followers 5K Following
Luna-rose Cotilla @r_cotill
67 Followers 5K Following
Patience Charry @PatienCharr
67 Followers 5K Following
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
Payton @Payton09497957
6 Followers 635 Following
CGTLive® @CGT_Live
563 Followers 154 Following CGTLive delivers quality and relevant information to healthcare professionals on cell, gene, regenerative, and engineered medicines to ultimately improve care.
Abigail Smet (she/her.. @Abigail_EEC
84 Followers 437 Following Speaking for the 🌲🌲 in Sacramento | Climate and conservation policy advocate at @EEC_California
Holly 💋 @Holly_Kinley96
1 Followers 399 Following Sultrу еnchantress with a dangеrоus tоuch оf sеduction
Ry Leahy @RySciComms
706 Followers 3K Following Science Communications for Advanced Therapies - Cell & Gene Therapy - Vice President of Research @phacilitate / #cellltherapy #genetherapy #firstgenacademic
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.
Setenay @Setenay65864778
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Annabella Bronstad @AnnabellBrons
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Mollie Lagroon @moll_lagro
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Pei Cleavenger @Cleavenger58034
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Mary Constantino @MaryConsta91262
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NJA @CYYZKBOS
54 Followers 2K Following Airlines, Automobiles, Israel, Judaism, Capital Markets. Trouncing anti-Semites on the interwebs one at a time. BOS-DFW-LAX-BOS RIP American Airlines 12/9/2013
Lillianna Byington @lil_byington
2K Followers 2K Following Reporter for Bloomberg Government covering transportation @BGOV • 📧: [email protected] • Formerly @FoodDive, @News21, @gwhatchet, etc •
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
Dania Herrod @dania_herr
48 Followers 5K Following
Oriana Pawlyk @Oriana0214
31K Followers 8K Following @politico aviation reporter. Ex-@Militarydotcom,@AirForceTimes. @MiamiUniversity alum. The B-1 ≠ nukes. 🇺🇸🇺🇦, Chicagoan, #avgeek. Opinions mine. RT, ♥️≠E
Marjorie Enny @EnnyMarjori
41 Followers 5K Following
Zara-rose Gucwa @guc_ros
42 Followers 5K Following
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Burma Taucher @BurmTauch
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Nida Sibounma @NSibounma39985
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S/S @CS5135378048991
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McSmelee @SmeleeMc49922
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Philomena @Tacey854294
147 Followers 4K Following See the world on the road, and get to know yourself on the way!
Imogen @soughm60527
318 Followers 5K Following See the world on the road, and get to know yourself on the way!
Alma @Seethu1021478
222 Followers 5K Following See the world on the road, and get to know yourself on the way!
Monroe @toughslo23355
494 Followers 5K Following See the world on the road, and get to know yourself on the way!
Pamela @Smeste127424
325 Followers 5K Following See the world on the road, and get to know yourself on the way!
Sathaez @Sathaez328601
3 Followers 1K Following
NeurologyLive® @neurology_live
9K Followers 674 Following Delivering healthcare professionals treating neurological diseases quality and relevant information to help achieve the best patient care possible. #MindMoments
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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.
Shah Minokadeh, M.D. @MinoShah
4K Followers 732 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
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.
Jean C9orf72 @Jeanc9orf72
1K Followers 858 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
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
ALS TDI @ALSTDI
10K Followers 6K Following The most comprehensive lab focused on ALS/Lou Gehrig's Disease. We are the Drug Discovery Engine discovering & inventing effective treatments for ALS. #EndALS
Mary Kay Turner @MaryKayTurner1
1K Followers 716 Following Government Affairs | Health Policy| Mom| Dog Lover | Oregon Ducks Fan| Traveler| Defender of Biopharma | Innovation Matters | ALS Advocate| Opinions Are My Own
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Noah Hiles @_NoahHiles
9K Followers 1K Following Pirates beat writer for @PittsburghPG l Big fan of Dave & Buster’s | Former owner of a legacy checkmark | University of Mount Union Alum | Let’s Go Knicks
Alex Stumpf @AlexJStumpf
11K Followers 990 Following Pittsburgh Pirates beat reporter for @mlb.com. BBWAA. Food picture taker. Yes, I know I look like that guy from Hot Tub Time Machine. Black Lives Matter. He/Him
Travis Sawchik @Travis_Sawchik
30K Followers 3K Following MLB writer for @theScore. Books: The MVP Machine, Big Data Baseball. Ballpark snob. Wanna reach out?: [email protected]
Niall Harbison @NiallHarbison
285K Followers 1K Following On a mission to save 10,000 dogs a month. Living in Thailand. Read more about the dogs and help out on the link below
A10 Talk @A10Talk
16K Followers 927 Following Your home for the best content from the Mighty Atlantic 10 Conference. Waiting impatiently every week for #FridA10. https://t.co/qCRCtfPUeZ
crazy ass moments in .. @ampol_moment
437K Followers 2 Following posting the crazy ass, weird as hell and wild moments from the politics and history of the eternal union. dms open for submissions.
Christian✞ @CWolfPGH
2K Followers 597 Following | Coverage & video on Pirates Prospects | All affiliates | | Updates & Projections | Romans 8:28 ✞ |
Morgan Roth 🌐 (she.. @MorganR_DC
2K Followers 3K Following #Beirut #Cairo #Kigali #Montréal #Lyon expat. Fmr bcast journo. Award-winning comms for 🌍 good. Named to Ragan Top Women in #Communication 2022. #nonprofit 🦓
Sunny Brous @sunnystrongals
2K Followers 623 Following I have ALS but it does not have me. No apologies, no excuses, no regrets, just me.
S Elling @ellsbelles3
98 Followers 1K Following Girl mama, McCainiac, Arizona is home but I live in DC 🌵 tweets are rare & all mine.
Mindy Henderson @MindyHSpeaks
63 Followers 50 Following Speaker, Writer, Health & Accountability Coach, Host of "The Truth About Things That Suck" podcast, guest contributor to "We Are Austin" morning TV show.
Holly Fernandez Lynch @HollyLynchez
5K Followers 744 Following Bioethics+law faculty @PennMEHP/@PennCarey_Law studying IRB quality (https://t.co/IknSpy21wk), preapproval access to investigational drugs, FDA pharma policy, + psychedelics
Bethesda Magazine is .. @Bethesda_Mag
15K Followers 2K Following Introducing MoCo360: Where the in-depth stories of Bethesda Magazine and breaking news of Bethesda Beat come together. Visit https://t.co/abWIAbsiYU now. #MoCo360
Source of the Spring @SourcetheSpring
5K Followers 482 Following Source of the Spring covers the latest news, events, and developments in the communities of Silver Spring and Takoma Park, Maryland.
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”.
Mindful @MindfulOnline
204K Followers 4K Following The best of mindfulness-based practices. https://t.co/1OrXHmhnto, events, courses, corporate training, licensed content, business media, directories, and partnerships.
Headspace @Headspace
312K Followers 2K Following Love your mind Providing mental health resources and tools for everyday life Need help? Send us a message @HeadspaceHelp
Rob Goldstein @GoldstroRob
189 Followers 432 Following I can walk, talk and chew gum at the same time. I am passionate about biotech, healthcare and patient advocacy. Tweets represent my own opinon not my employer's
Men4Choice @Men_4_Choice
33K Followers 358 Following We aim to create a world where allies are equipped to deconstruct misogyny by changing the way men think/speak/engage in the fight for reproductive freedom.
Justice delos Santos @justdelossantos
7K Followers 820 Following Sports Reporter for @mercnews / Former: @MLB / 🇵🇭🇮🇪 / He-Him-His / Cal ‘20 / @aaja / BBWAA
Heidi Ross @HeidiNRoss
83 Followers 648 Following ❤ domestic and global health. VP, Policy & Reg Affairs @RareDiseases. Previously @MalariaNoMore, Hill staffer. Married to @EricSRoss, girl mom. Tweets my own.
Monkol Lek @theFourier2k
2K Followers 1K Following Asst Prof of Genetics at @YaleMed Working on ending the diagnostic odyssey for all rare disease patients! @dgmacarthur lab at MGH and @broadinstitute Alum
Josh @joshkrantz
258 Followers 3K Following
Rum Bunter @rumbunter
17K Followers 684 Following The best Pittsburgh Pirates blog. Period. Part of the @FanSided sports network.
chaotic memes @memechaotic
1.6M Followers 7 Following DM for credit or removal | previously @/clubphotos_
McKenna Mitchell @kenmitchie13
307 Followers 324 Following astonish a mean world with acts of kindness
Rich Horgan @RichHorgan
437 Followers 215 Following Founder and CEO of @CureRareDisease. Rare Disease Advocate and R&D Accelerator. @HarvardHBS ‘18. Forbes 30 Under 30.
Michael Lewis @MichaelKLewis
112 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.
Silver Spring&Takoma .. @sstpmutualaid
68 Followers 37 Following We are a group of volunteers, formed in March 2020, to strengthen our local community's response to the basic needs people have during a pandemic and beyond.
Allison Herrity @AllisonHerrity
105 Followers 205 Following Senior Policy Analyst @rarediseases, 2x alum @gwpublichealth. Fan of crafts, my cats & the washington commanders. Opinions are my own. (she/her)
Dave Wasserman @Redistrict
642K Followers 1K Following Senior Editor & Elections Analyst of the nonpartisan @CookPolitical Report w/ @AmyEWalter. Nerd for 🗺️ maps, ⛷️ ski slopes & 🎻 trad tunes. Has seen enough.
NFL Memes @NFL_Memes
1.4M Followers 76 Following We make fun of your favorite football team. (Not affiliated with the NFL) Contact: [email protected]
Frog and Toad Bot @FrogandToadbot
231K Followers 17 Following Frog & Toad fan page. Tweets every 3 hours. Manual retweets & non-quote/image tweets. Books by Arnold Lobel. Powered by @GimmickBots.
Penguins Jesus @PenguinsJesus
48K Followers 987 Following Blessed are the Faithful Penguins fans. RTs are not scripture.
Danielle Reinhart @RyansMom2
2K Followers 5K Following Mom of 4, research & advocacy, data science, knitter, she/her views=my own
Silver Spring Justice.. @SilverCoalition
2K Followers 731 Following A coalition of grassroots & faith-based orgs committed to ending police abuse in MoCo and Maryland. Text “Defund” to 33777 #DefundPoliceMoCo
Megan B. Miller @megbmiller
223 Followers 756 Following Neuroscientist, advocate, runner, traveler, mom. Tweets are my own.
Rebecca Cokley @RebeccaCokley
45K Followers 13K Following 2nd gen civil rights activist, philanthropy, former amprog, ObamaWhiteHouse, networkweaver, proud mom. YNWA. She/her/hers. BLM.☔️ Tweets are my own. AFOL.
Cyrus Huncharek @chuncharek
282 Followers 490 Following Now in government. Formerly @NDSC @NDRNadvocates @NationalPTA and @TeachForAmerica Corps Member. Tweets are my own.
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)
Jesse Marshall @jmarshfof
26K Followers 2K Following Freelance Penguins talk. @TheAthleticNHL @McKeenshockey @ThePHWA. NHL Draft. #fancystats. Hockey Strategy. West Ham. Gaming. Racing. Mental health. Girl Dad.Join MDA #Advocacy for updates from the #DMD community on Friday, May 3 at 1:00 PM ET. More details here: 👇
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…
Kudos to @mda! I’m very excited by this initiative at the intersection of two causes I’m passionate about - the rights of the #neuromuscular community and #VotingRights. Learn more 👇
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
I suppose it’s been an ENGAGING weekend. Here’s to together forever with the love of my life, from park hangs and canvassing days, to nights at our favorite spots, and everything in between. How’d I get so lucky? I love you Aparna ❤️
I cast my vote for @mda’s #AccessibleAirTravel campaign for the #ShortyAwards Audience Honors! Please support our great and important work to make sure everyone can fly safely and with dignity! Vote daily through April 30! shortyawards.com/16th/accesible…
You will never be irrelevant, You will never be forgotten, So lock up the liquor cabinet @RachelDoboga, because we refuse to leave you alone. #EndALS #WeLoveRachel
@EndALSNow I would be honored if you shared your tweet asking for the ALS community to send me some love and support. I feel irrelevant and alone.
Excited to be attending this years #ACMGMtg24 during #MedicalGeneticsAwareness week! Looking forward to gaining some insight into the challenges rare patients and providers are facing with access and coverage of genetics services to inform our policy work at @RareDiseases
NCATS’ Division of Rare Diseases Research Innovation Deputy Director Dr. P.J. Brooks spoke at the #MDAconference! 🎙️ Hear from Dr. Brooks on #GeneTherapy development efforts like the Bespoke Gene Therapy Consortium (#BGTC) & the PaVe-GT Pilot Project ⬇️
PJ Brooks, PhD, deputy director, Office of Rare Diseases Research, @ncats_nih_gov discussed initiatives including the BGTC and the platform vector gene therapy project at #MDAconference. Watch the convo now! cgtlive.com/view/brooks-wo…
Thank you @POTUS for committing to cap the costs of prescription drugs! This issue is big for the #neuromuscular community & #MDA will work with Congress to make this happen! #SOTU
Starting next year, President Biden’s Inflation Reduction Act will cap prescription drug costs for seniors at $2,000 a year. Now, he is calling on Congress to expand that cap to ALL Americans.
#MDA once again hosted the annual gathering of the Neuromuscular Advocacy Collaborative at the #MDAconference with MDA’s Vice President of Public Policy & Advocacy, @PMelmeyer. The meeting brought together leaders from 20+ neuromuscular advocacy organizations. @MDA_Advocacy
Keep up the great #advocacy work, Conner! 👏
Conner’s courage & conviction are inspiring. For 8 years, I’ve fought alongside him & his family to help support lifesaving treatments for kids suffering from rare diseases like Duchenne Muscular Dystrophy.
@alsadvocacy @limpbroozkit We sure did! Watch here: youtube.com/watch?v=7gPSby…
We are a proud part of the Neuromuscular Advocacy Collaborative, working to overcome obstacles affecting neuromuscular diseases, lobby for legislative change to support the development of treatments, & improve quality of life for those with neuromuscular disease. #MDAConference
In the big room @MDAorg waiting excitedly for @limpbroozkit’s remarks!
I'm at the @WhiteHouse this morning with @SecretaryPete & @USDOT to make an announcement about how to make travel easier & more dignified for people with mobility issues ⬇️
I just wrapped up a great meeting with @SecretaryPete & his team at the White House about protecting the safety, rights & dignity of air travelers with mobility issues.
#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
It’s #RareDiseaseDay! We’re holding a Health Subcommittee legislative hearing to discuss solutions—like supporting research and fostering innovation—to provide hope to patients with rare diseases. Tune in at 10:00AM! energycommerce.house.gov/events/health-…
real pic of our @RareDiseases policy team group chat when @RepKimSchrier touched on newborn screening, the Medical Nutrition Equity Act, and the Accelerating Kids' Access to Care Act all in one statement
Earlier, #MDA’s @PMelmeyer & @MindyHSpeaks were honored to be at @WhiteHouse w/ @SecButtigieg, @USDOT leaders, @SenDuckworth & passionate #disability advocates to celebrate the Biden Administration’s proposed rule to improve #AccessibleAirTravel for passengers w/ disabilities.
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