Parent Project Muscular Dystrophy (PPMD) @ParentProjectMD
Let's fight for every future. #PPMDeveryfuture #EndDuchenne parentprojectmd.org Washington, D.C. Joined June 2009-
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From the founding of PPMD in Cincinnati 30 years ago to the present day, this community's unwavering commitment, passion, and resilience have been the driving force behind our fight for every future. Thank you for honoring our milestone anniversary. parentprojectmd.org/thank-you-for-…
Action Alert: Urge your U.S. Senators to support the FY25 Duchenne funding request by Friday, May 3rd! Learn more and take action now: engage.parentprojectmd.org/fy25-senate
PPMD is excited to announce a $250,000 award to Bo Hoon Lee, MD, from the @UR_Med to support the development of a clinical research network for #Duchenne babies identified through #newbornscreening efforts in New York State. parentprojectmd.org/ppmd-awards-25…
As PPMD celebrates 30 years, join us in the fight for every future by becoming a monthly donor or increasing your existing contribution. Your support drives research, advances care, and empowers PPMD to advocate for policies that support our community. donate.parentprojectmd.org/give/394620/#!…
Join PPMD, @MDAorg, @EveryLifeOrg, and @LHF_EndDuchenne for a collaborative webinar on Friday, May 3rd at 1pm ET updating the community on the latest developments in #newbornscreening for #Duchenne. Register now and submit questions in advance: parentprojectmd.org/events/webinar…
PPMD and @DuchenneUK are excited to announce that pediatric neuromuscular neurologist Professor Peter Kang MD from @umnmedschool has been awarded a $500,000 grant for his research project titled “Phase 1 clinical trial of myogenic progenitors for DMD.” parentprojectmd.org/duchenne-uk-an…
Ohio will be the first state to screen all babies for #Duchenne! More than 129,000 babies are born in Ohio every year, and the state expects to identify 35 babies with Duchenne annually. Learn more: parentprojectmd.org/ohio-to-begin-…
Your generous support ensures that PPMD has the resources it needs to keep making a difference for families in the years ahead, building on 30 years of impactful work. Give today: donate.parentprojectmd.org/give/394620/#!…
We are proud to share some truly special news: @CityOfCincy Mayor @AftabPureval has declared today, April 19th, 2024, as “Patricia Furlong Day,” in honor of PPMD's Founding President and CEO! Learn more: parentprojectmd.org/ppmd-celebrate…
PPMD’s state Advocacy Day in IL is here! PPMD advocates are in Springfield, IL today championing legislation for #newbornscreening, mandatory protocols and best practices for providing medical guidance for Duchenne, and #Duchenne Muscular Dystrophy Awareness Day.
Yesterday @EdgewiseTx announced positive two-year topline results from the ARCH open label study of sevasemten (EDG-5506) in adults with Becker. Learn more: parentprojectmd.org/edgewise-thera…
The Capitals announced today Tom Wilson as the recipient of the organization’s inaugural Caps Care Community Award in honor of his efforts in the community during the 2023-24 season. Wilson will be recognized ahead of #CapsBruins during a pre-game ceremony. 📰⬇️
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
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
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.
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Joe @Gantosj
12K Followers 243 Following Equity market consultant. Technical Analysis Trader with over 25 years of experience. #Biotech Deep dive research. Biotech Trading Analyst @ChimeraResearch
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.
Muscular Dystrophy Ca.. @MD_Canada
5K Followers 1K Following MDC's mission is to help people with neuromuscular disorders live life on their own terms. #WalkRollMDC #MuscularDystrophy FR: @Action_Musclee
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
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).
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
ENMC @_ENMC
1K Followers 379 Following
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
Jordi Díaz-Manera @querques2000
773 Followers 968 Following Professor of Neuromuscular Diseases at Newcastle University @jwmdrc. Passionate about clinical and basic research, but also about wine, sport, music and books.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Paola Vaprio @PaolaVaprio
102 Followers 278 Following
Shawen Bradshaw @ShawenBradshaw
37 Followers 206 Following
Jose Canon @chepeCanon1983
42 Followers 695 Following Medico Pediatra. Neuropediatra. Colombiano. Compré la ciudadanía paisa en el hueco.
IJNS MDPI @IJNS_MDPI
288 Followers 339 Following Official journal of #ISNS, #DGNS, #JSNS, #APHL-#NewbornScreening & #Genetics Program and #UKNSLN. Indexed in Scopus, EMBASE, PMC and WoS. #MDPI
TJ Cahill @tjcahill22
90 Followers 1K Following
Mehmet veysi Öncel @Flankesbey1774
11 Followers 196 Following
BÇ Arslan PT, PhD(C) @ptBasakC
952 Followers 763 Following öğr gör #LHÜ | uzm fzt | ergoterapi #Hacettepe 🌸Florebo quocumque ferar🌸 #GamFedTürkiye Oyunlaştırma Gönüllüsü
Angie Taylor @AngieTaylo34961
972 Followers 855 Following like this if you’re horny, i might dm you my nudes cuz why nott🤭💥 😸 like this if you’re horny, i might dm you my nudes cuz why nott🤭💋 ⍟
Quimby @KylieThomp77892
3 Followers 1K Following
Joshua Busby @joshuabusby
1K Followers 715 Following Break barriers, achieve goals, & thrive, as I am with Duchenne MD. | Husband, Dad, Minister✝ Certified Life Coach https://t.co/q4VNfhscHe
kirubakaranpalaniyapp.. @kirubakaranpal1
1 Followers 21 Following
falcon @bos46476740
4 Followers 351 Following
Jon Hollowell @thatguywithcmd
2 Followers 19 Following Thirty-something guy in England living with Congenital Muscular Dystrophy. Author of the website and blog https://t.co/be1ruDpUlW
ElMallah Lab @ElMallah_Lab
5 Followers 22 Following Duke University. Duke Childrens Hospital. AAV gene therapy. Novel therapies for respiratory insufficiency in neuromuscular disorders.
kirubakaran27 @kirubakaran2702
2 Followers 7 Following
BiopharmaBytes @BiopharmaBytes
13 Followers 156 Following Biopharma Bytes stands at the forefront of transforming how professionals digest the latest developments in biopharmaceuticals - one byte at a time.
Blue13 @cincytige_j
89 Followers 87 Following
Marie Brace @MarieBrace85187
0 Followers 4 Following
Darren Walker @walk60276
374 Followers 1K Following
Selçuk @Seluk54312908
2 Followers 25 Following
the master @pablo_arias_s
4 Followers 64 Following
Anna @AnnaMiki23
0 Followers 29 Following
Glendalee deRuiter @MGMdeRuiter77
23 Followers 63 Following
Loreen Kussauer - Gro.. @KussauerLoreen
0 Followers 9 Following
Sarah Kasner @rahdevries
92 Followers 123 Following mom, step-mom, wife, best youngest daughter, sister, employee, yogi, runner
Adriel Hernando @adriel_hah
181 Followers 697 Following PhD student in @Dandergassen lab at TUM | 🇮🇩/🏳️🌈 | Looking at the not-so-inactive X chromosome in cardiovascular disease🫀
Eva Alicia Uría Guzm.. @uria_guzmane
210 Followers 2K Following Apasionados por contribuir y dar valor a las personas.
م..عبدالكري�.. @ENGALALKAMI1985
13 Followers 147 Following
Mohamed Ali @ma8535847
0 Followers 74 Following
bcorazza @bcorazza2
2 Followers 83 Following
RxDataWatch @RxDataWatch
37 Followers 194 Following
RYAN LEVI WEDDLE @RYANLEVIWEDDLE
500 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.
Özkan Akın @Noyausang
72 Followers 234 Following
Debby Brown @grammybrown01
5 Followers 91 Following
LDII @LamarDavis4
58 Followers 291 Following I am : a follower of Christ, allergic to gray, a fan of all things MC and Peyton Manning.
Micha Breakstone 🇮.. @MichaBreakstone
875 Followers 672 Following CEO/Founder @ https://t.co/mPei80rB2G (previously co-founder @chorus_ai) • Perennial entrepreneur • MSc Math, PhD Cog. Sci. • Husband, father • Aspiring novelist
Jessica G. @JessicaG2024
26 Followers 147 Following Bring him back home... Bring him back to power... Habakkuk 2:3 Hebrews 11:1
Akanksha Agrawal @Akanksh55785372
5 Followers 91 Following
dylan hughes @Dylforfun
8 Followers 19 Following
Bilgin @doktorbilgin1
7 Followers 43 Following
Catalyst @CatalystForRare
862 Followers 264 Following A commercial-stage biopharmaceutical company focused on in-licensing, developing, and commercializing novel medicines for patients living with rare diseases.
Lancaster Films @lancasterfilmz
17 Followers 55 Following 24 year old Filmmaker and podcaster from Yorkshire. Displaced - Out Now on YouTube
Julie Ravenscraft, Ph.. @jravenscraft15
139 Followers 284 Following
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
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
CureDuchenne @CureDuchenne
6K Followers 510 Following We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community.
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.
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
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.
Muscular Dystrophy Ca.. @MD_Canada
5K Followers 1K Following MDC's mission is to help people with neuromuscular disorders live life on their own terms. #WalkRollMDC #MuscularDystrophy FR: @Action_Musclee
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
Solid Biosciences @Solid_Bio
1K Followers 210 Following Solid’s mandate is to improve the lives of patients living with devastating neuromuscular and cardiac diseases. #TogetherWeAreSolid
Bruce Booth @LifeSciVC
50K Followers 731 Following Early stage biotech VC. Recovering scientist. Opinions expressed are solely my own and do not express the views or opinions of Atlas Venture.
Action Duchenne @ActionDuchenne
6K Followers 1K Following Our vision: a world where lives are no longer limited by Duchenne muscular dystrophy. Our objectives: research for all, science education, world-class support.
Pathfinders Neuromusc.. @PathfindersNMA
2K Followers 436 Following User-led organisation, campaigning for choice, control & quality of life for adults with #MuscularDystrophy and related conditions. We offer peer support & info
elizabeth vroom @elizabethvroom
768 Followers 158 Following @worldduchenne 🌍 @duchennepp 🇳🇱 @duchenneday 🎈
Myotonic Dystrophy Fo.. @MyotonicStrong
2K Followers 348 Following The world's largest patient organization focused solely on #myotonicDystrophy. Our mission is Community, Care, and a Cure.
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
ICAP Charity Day @ICAPCharityDay
6K Followers 753 Following The official ICAP Charity Day twitter page.
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
Liesl Broadbridge @Liesl_CGC
404 Followers 354 Following Genetic counselor • PhD candidate @RutgersCommInfo • health comm, health policy • previously: @JohnsHopkinsHBS + @genome_gov, @NIH postbac, @UWBiochem • she/her
DFSG @DuchenneFSG
1K Followers 114 Following The Duchenne Family Support Group supports UK families affected by DMD. We bring people together for mutual support, social activities and information sharing.
Senator Amy Klobuchar @SenAmyKlobuchar
95K Followers 5K Following Senior U.S. Senator from MN | Chair of the Senate Rules Committee & Judiciary Antitrust Subcommittee | Snow enthusiast ❄️
Archive: Steve Stiver.. @RepSteveStivers
33K Followers 896 Following The archived tweets of Steve Stivers, Representative for Ohio's 15th Congressional District from January 3, 2011 to May 17, 2021.
Sen. Debbie Stabenow @SenStabenow
155K Followers 2K Following Mom, Grandma, musician and honored to represent the people of Michigan in the U. S. Senate, she/her
Burgess Owens @BurgessOwens
365K Followers 1K Following Representing #UT04 in Congress Super Bowl XV Champion
Rep. Debbie Dingell @RepDebDingell
102K Followers 3K Following Proudly serving the people of Michigan's 6th Congressional District. Chair of @HouseDPCC.
THREAD @THREADresearch
654 Followers 218 Following THREAD named leader in the DCT Products PEAK Matrix® Assessment & winner of the Frost and Sullivan's “Customer Value Leadership Award” in the DCT industry.
Little Hercules Fdn @LHF_EndDuchenne
740 Followers 1K Following We serve the rare disease community through access advocacy and good policy. Patients and families first.
Another Day for Gray @anotherday4gray
1 Followers 0 Following
APHL @APHL
8K Followers 2K Following Association of Public Health Laboratories works to strengthen labs serving the public's health in the US and globally
Filippo Buccella @FilippoBuccella
1K Followers 2K Following Father, Founder Parent Project Italy, Founder Eupati Italy, Pharmacist, guitar, bass & drums player 😏
HHS.gov @HHSGov
1.5M Followers 354 Following News and information from the U.S. Department of Health & Human Services (HHS). Privacy policy: https://t.co/2fvEGkrCJN.
MU School of Medicine @mumedicine
4K Followers 195 Following The MU School of Medicine aims to improve the health of all people, especially Missourians, through exemplary education, research and patient-centered care.
Whataburger® @Whataburger
1.2M Followers 170K Following There's pride in every Whataburger. #ProudToServeYou
Larry Luxner @LLuxner
957 Followers 314 Following Veteran journalist covers global politics & rare diseases, with focus on Mideast, Asia, Africa & Latin America. Loves hiking, saltwater fish and license plates.
Richard Blumenthal @SenBlumenthal
699K Followers 975 Following Official Twitter account of U.S. Senator Richard Blumenthal, proudly working for the people of Connecticut.
Brian Denger @regned2
10 Followers 7 Following
Mallory Dupree @BT_Dupree
6 Followers 4 Following
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 |
Richard Wang @RichardTWang
120 Followers 486 Following Medical genomics research @illumina. Formerly human genetics @UCLA. Tweets are my own.
Energy and Commerce C.. @HouseCommerce
36K Followers 1K Following House Committee on Energy and Commerce | Chair @cathymcmorris
Denise @niseag03
2K Followers 2K Following Fightin' Texas Aggie c/o 2003. Photographer, blogger & bartender. Breast cancer survivor. Married to a touring musician/tour bus driver. Life is a trip.
EGLGenetics @EGLGenetics
425 Followers 362 Following EGL Genetics is a fully integrated CAP-accredited and CLIA-certified diagnostic laboratory dedicated to providing superior, cutting-edge genetic testing.
Muscle Owl @MuscleOwl
8K Followers 3K Following Media and campaigns organisation dedicated to raising awareness of muscular dystrophy and changing attitudes towards disability.
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!
thesarayoung @thesarayoung
6 Followers 26 Following
WF Innovations @wfinnovations
405 Followers 137 Following Wake Forest Innovations improves health through collaborative innovation.
Duchenne Heroes @Duchenne_Heroes
2K Followers 2K Following Duchenne Heroes, Mountainbiken! 700KM, 7 dagen, 4 landen, 1 doel: De strijd tegen de ziekte van Duchenne!
CDMD at UCLA @cdmducla
340 Followers 180 Following Center for Duchenne Muscular Dystrophy at UCLA. Providing clinical care and ground-breaking research for Duchenne. https://t.co/UsuO9pS0ir
Dr. Jan Nolta @jan_nolta
12K Followers 8K Following Director, Univ. California Davis Health Stem Cell Program & Gene Therapy Center. Editor, Stem Cells. #firstgen https://t.co/UYKJpKOqGz
Bob Coughlin @BobCoughlin
7K Followers 2K Following Managing Director, Life Sciences @JLL, former @MassBio CEO. Public Speaker, Former MA House of Representatives, Patient Advocate, CF Dad, #PatientDriven
Matt Walsh @MattPPMD
36 Followers 26 Following Community Engagement Coordinator for Parent Project Muscular Dystrophy. Leading the fight to #EndDuchenne.
Senator Roger Wicker @SenatorWicker
115K Followers 713 Following Senior U.S. Senator for Mississippi. Ranking Member @SASCGOP. Please visit my website for updates.
Kindness Over MD @KindnessOverMD
179 Followers 357 Following Help us save our son Conner's life by raising money to cure Duchenne Muscular Dystrophy!
Michelle Ioannou @mnioannou
5K Followers 389 Following corporate america with an entrée of baseball. if lost, please return to the nearest beach or ballpark. now: @MetsMerized prev: @SNYtv https://t.co/IJRfXfAk85
d//y//l//a//n @FistFightingDMD
224 Followers 156 Following //ACTIVIST//YOUTUBER// SC:d.micelinelson INSTA:dylanmicelinelson BIZ:[email protected] LATEST VIDEO⬇️
The ALS Association @alsassociation
33K Followers 890 Following The ALS Association / Fighting ALS on every front through research, care services, and advocacy. Community guidelines: https://t.co/Af1fOXYrBe
Pfizer Inc. @pfizer
490K Followers 2K Following Breakthroughs that change patients' lives. Visit https://t.co/zipcKiG1jD to learn more. https://t.co/FPP9fmzZh6The Capitals announced today Tom Wilson as the recipient of the organization’s inaugural Caps Care Community Award in honor of his efforts in the community during the 2023-24 season. Wilson will be recognized ahead of #CapsBruins during a pre-game ceremony. 📰⬇️
Reminder that these #CARLY1K player-worn, autographed @Capitals jerseys could be YOURS! Bid, Buy Now or Donate now at WashCaps.com/CARLY1K Proceeds benefit @ParentProjectMD - a cause important to the Caps players and hand selected by @JohnCarlson74
Our @Capitals #CARLY1K Auction is open for bidding at WashCaps.com/CARLY1K Bid now on player-worn autographed tribute jerseys in honor of Carlson’s 1,000th game. Proceeds benefit @ParentProjectMD whose mission is to fight to end Duchenne.
Our #Carly1K Jersey Auction is LIVE! Place your bids on the Carlson tribute warmup jerseys or buy one now, with proceeds benefitting @ParentProjectMD. Check out the auction at WashCaps.com/Carly1K
Congrats @ParentProjectMD on your 30th anniversary! We are proud to support you and the amazing work you do advancing research, advocating for change, and empowering and supporting families affected by #Duchenne and other muscular dystrophies.
In April 1994, in Cincinnati, PPMD was founded with a vision of creating a community that refuses to accept #Duchenne as an insurmountable obstacle. In honor of our 30th Anniversary, we invite you to join us in the ongoing fight for every future. donate.parentprojectmd.org/give/394620/#!…
During warmups, @Capitals players will wear #74 jerseys, which will be signed and auctioned off in a @MSEFndn Carly1K Jersey Auction to benefit @ParentProjectMD. PPMD’s mission is to end Duchenne muscular dystrophy, which is the most common type of muscular dystrophy in children.…
The Capitals will honor John Carlson for reaching 1,000 career games on April 7, when the Capitals host the Ottawa Senators at Capital One Area at 6 PM. During the ceremony, @JohnCarlson74 will receive a special gift from the NHL, the organization, and his teammates. #Carly1K
📣 BREAKING NEWS: The @UN unanimously designates September 7 as World Duchenne Awareness Day. 🤝 This was co-sponsored by 128 Member States, the highest number of co-sponsorships in the 78th session as of today for a resolution tabled by one country. worldduchenne.org/news/united-na…
The distinguished representative of Kuwait is introducing the draft resolution to the @UN. Tareq Albanai gave an inspiring speech on what this recognition means to the Duchenne world. @KuwaitMissionUN
Today is #WorldDuchenneAwarenessDay! To raise awareness, NHC member @ParentProjectMD shares key insights on 15 years of Duchenne patient-reported data in a new guest blog post. Click below for more info. bit.ly/44EQnuV
We're excited to welcome @ParentProjectMD to our Patient Advocacy Advisory Council! Learn more about their important fight to ending Duchenne: parentprojectmd.org
PepGen is delighted to participate in a panel discussing exon skipping technology at the upcoming Parent Project Muscular Dystrophy (PPMD) conference on Friday, June 30 at 10:45-11:45 am CST. To learn more and register, please visit bit.ly/3XpTxAT
Sophie and Matty will be representing Little Journey at the @ParentProjectMD Conference at the Sheraton Dallas Hotel in Dallas, Texas from the 29th of June to the 1st of July 🌟 Make sure to come over, say hi and play along with our fun family orientated activity at our stand!
We're looking forward to @ParentProjectMD's Annual Conference in Dallas. This important event is a highlight for our team and we’re proud to be a Platinum sponsor. Join our Chief Medical Officer @KreherNerissa who will present on Friday! #PPMDconference
Along with @CureDuchenne and @ParentProjectMD, we’re proud to announce a collaborative #ClinicalTrial grant to test repurposing of the FDA-approved drug Vyvgart (developed by @argenxglobal) for #Duchenne #MuscularDystrophy (#DMD) patients: mda.org/press-releases…
Today, @MDAorg co-sponsored the re-nomination of #Duchenne #MuscularDystrophy for the Federal #NewbornScreening panel. In collaboration with our colleagues at @ParentProjectMD, we hope this nomination will be reviewed later this summer & move to full evidence review this Fall.
@ParentProjectMD @nationwidekids @LCripeMD got me headed down this path. She was ahead on the curve on the importance of cardiac evaluation and treatment. Give if you can. Pass it along if you can’t give. Happy holidays!
We're launching a joint grant call with US organisation @ParentProjectMD, up to $1m to be awarded to an innovative project to address current challenges in gene therapy, cell-based and regenerative therapies: duchenneuk.org/duchenne-uk-an… #DMD #Duchenne #DMDresearch
@ParentProjectMD Please send Kathi our thanks & good wishes for retirement! I remember her as very kind & knowledgeable.
“THREAD’s technology & partnership allowed us to make the Registry more accessible & intuitive for everyone – including patients, caregivers & researchers,” -Ann Martin, @ParentProjectMD. Check out our impressive results: bit.ly/3vFdk0R | #DecentralizedTrials @RehabMgmt
Jordan and I had a great meeting with our @RepAndreCarson ‘s health LA today! He’s a champion for rare disease! 💪🏼 As was pointed out in the conversation, now that boys are living longer w/ #Duchenne we have new challenges… but those are good challenges to have! #PPMDadvocacy
We are so immensely proud of our 2021 PPMD Advocates! #PPMDAdvocacy 400+ advocates are meeting with Congressional offices today, urging them to support progress in the fight to #EndDuchenne. Support our advocates by reinforcing our message from home at join.parentprojectmd.org/takeaction
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