L-CMD Research Foundation
@FoundationLcmd
Nonprofit raising $ to urgently research treatments/cure fatal childhood disease LMNA-related congenital muscular dystrophy http://lcmdresearch.org
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It's Muscular Dystrophy Awareness Month. Here are a few photos to show you what happens to me and others with my very rare type of MD called LMNA-CMD. It only affects around 1 in a million babies. @MDUK_News @FoundationLcmd @CureCMD
Great to join @DuchenneMD’s annual benefit for research into treatment for Duchenne Muscular Dystrophy with Senators Collins and Wicker, Congressman Joyce, and @chefjoseandres. We're working to support treatment for this disease and I'm excited to see what advancements are next.
Helping millions affected with rare diseases starts with awareness. I’m proud of @CDLeganes for making this a priority.
💜💚 𝗔 𝘃𝗲𝗿𝘆 𝘀𝗽𝗲𝗰𝗶𝗮𝗹 𝗺𝗼𝗺𝗲𝗻𝘁 😍 Uriel and Alonso received a very warm welcome before our previous match. 🌐 Both took the ceremonial kick-off to commemorate World Duchene Awareness Day. @FEDER_ONG @DPPSpain
Carmela's Buddy Bear Campaign to help children in hospital. If you have a child who has Muscular Dystrophy, please contact Lucy (mum) via email to be added to the waiting list to receive a sponsored Buddy Bear teddy. [email protected] @MDUK_News @FoundationLcmd
#GeneticTesting Let's get the kids diagnosed sooner and lessen the odyssey and give them a better opportunity to get care and contribute to research. And all the adults!! Where they at?
This is me. I am a 42 year old father and husband living with a currently fatal disease, ALS. I tweet about ALS, advocacy, changing the world and my life. My tweets have been called inspiring and raw. I dare you to follow me. You won’t regret it.
The Children's Heart Foundation is proud to fund the @AmerAcadPeds Pediatric Cardiology Research Fellowship Award.❤ The award represents a tremendous opportunity for junior faculty in pediatric cardiology to gain research experience. bit.ly/CHF-AAP
Don't forget, the International Limb Girdle Muscular Dystrophy Conference is this October 27-29 in Washington, D.C.! buff.ly/41b9WtC
Congrats!!!!
We are thrilled to announce that Miaya Allen has been promoted to the #ChildrensTherapy Clinic Program Director! Get to know our new director & her team of excellent therapists at eastersealshouston.org/childrens-ther… today! #OccupationalTherapy #OT #SpeechTherapy #SLP #PhysicalTherapy #PT
🌞 Good Morning Rare Friends "A warrior believes in an end they cannot see and fights for it. A warrior never gives up. A warrior fights for those weaker than themselves." #RareDiseaseTruth
Ignacio Pérez de Castro (@IPdC1), from the Institute of Rare Diseases Research of @SaludISCIII presents his research on: 🧬✂️ 'Heterogeneous responses to the application of different gene therapy strategies on an Lmna-R249W mouse of LMNA-related congenital muscular dystrophy'.
Check out AustinOfTheDay! #TikTok tiktok.com/@austinoftheda…
Join @mlweldon5 Saturday, May 6, 2023, for a networking lunch discussing the topic of "Parents of Newly Diagnosed Rare Pediatric Patients". Renaissance Downtown Hotel Washington, DC 12:10-1:10pm EST It’s not to late to register! livingrare.org @RareDiseases #syngap1
Roses are red 🌹 Violets are blue 💠 Text a #RareDisease friend today 📱 And say, "I see you." 👀
Hi, my name is, Effie Parks. Welcome to the CTNNB1 community. ::When the #CP patients get a test and start rolling in with a precise diagnosis:: #GeneticTesting eurekalert.org/news-releases/…
TODAY is #RareDiseaseDay! 🧡💙 All around the world, the rare disease community is coming together to #ShowTheirStripes, raise awareness, and demand equity for people living with a rare disease. As a global community, we have a powerful voice! 📣
Six years ago I was told to prepare to die. This is the improbable, inspiring, love-filled, hope-filled, true story about the extraordinary campaign that happened next. This is where you come in: please share this trailer with everyone so that we can bring hope to everyone.
The faces of #raredisease children are on the Jumbotron in Times SQUARE from @BeyondtheDx #RareInTimesSquare #RareDiseasDay #CTNNB1 #rarediseasechat
Can’t say enough wonderful things about Dr. Ignacio Pérez de Castro and his team 👏👏👏👏👏 #ThankYou
👋🏼 Meet Ignacio Pérez de Castro (@IPdC1), one of the organizers of the 4th @IMLaminopathies! 🧬 As Group Leader of the Gene Therapy Unit at the #RareDiseases Research Institute (@SaludISCIII), his work is focused on finding new therapeutic strategies to fight human diseases.
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