Game for Cures @GameForCures
Streaming for @CureRareDisease and our mission to develop medicines for kids fighting fatal diseases. #GameForCures cureraredisease.org https://discord.gg/NUE8pENdQ4 Joined August 2020-
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Calling all #Whiskey Lovers! The Second Annual SETX Whiskey Festival tickets are on sale now. All proceeds will support CRD. Buy your tickets now before they sell out. #Whiskeylover #rarediseaseawareness #fundraiser #Whiskeyfest #setx #setxwhiskeyfest #cureraredisease #dmd
October 7, the Baweja & Warner families hosted our inaugural Waves of Hope Wine Tasting event in California, raising more than $83,100! Thank you to our community who joined us for an evening by the ocean in support of our work & mission. #raredisease #genetherapy #dmd #adssl1
Thank you @Luwuaren for supporting @CureRareDisease! 🩵 #gameforcures #rarediseaseawareness #fundraiser
We are grateful to our CRD community for your heartwarming gestures in remembering Terry, who left us a year ago yesterday. Special thanks to the Sharp family for their touching blog tribute to honor Terry's memory. #duchenne #duchennemd #cureraredisease #raredisease
Check out this great TV interview featuring the inspiring Bryan Family and their unwavering fight against #Duchenne muscular dystrophy. Thank you to Dynamic Spine & Neuropathy for continuing to support Bryan Boys for Hope & @CureRareDisease. #rarediseaseawareness #genetherapy
Here is a letter from Terry's Parents: liebertpub.com/doi/10.1089/hu…
Here is a letter from Terry's Parents: liebertpub.com/doi/10.1089/hu…
One year ago, Terry Horgan’s life-long battle with #DuchenneMD ended. Every day since, our team has continued to move science forward for ultra-rare disease patients in his honor. His bravery & resilience remains the inspiration for our community & the patients still fighting.
Your continued support for @GameForCures helps @CureRareDisease continue to break down barriers in the #raredisease community. Thank you 🩵 #Duchenne #breakingbarriers #DuchenneMuscularDystrophy
Your continued support for @GameForCures helps @CureRareDisease continue to break down barriers in the #raredisease community. Thank you 🩵 #Duchenne #breakingbarriers #DuchenneMuscularDystrophy
Last week, @SenBlumenthal visited CRD's lab space in Woodbridge, CT to see the impact of the designated federal grant on the renovations. We appreciate his support in helping to secure the critical funding for this project, which will help advance CRD's R&D. #rarediseaseresearch
It's #WorldDuchenneAwarenessDay & today CRD is celebrating the community that inspires us - the researchers, families & boys that are breaking down barriers. Together, we will continue to create a better future for everyone impacted by #Duchenne. #WDAD2023 #WDAD #breakingbarriers
Check out our first Researcher Spotlight as we take you through the Weisleder Lab at the @OhioStateMed with Dr. Noah Weisleder and explain how their collaboration with CRD is helping to advance life-saving therapies for rare and ultra-rare diseases.
We're celebrating our awesome community with a MERCH GIVEAWAY! Sign up for CRD's Newsletter by clicking the link & tag 3 friends in the comments! One lucky winner will receive a CRD Merch Bundle filled with exclusive goodies! Giveaway ends 8/14 at 3 PM EST #rarediseaseawareness
It's National #DisabilityIndependenceDay! 33 years ago today on 7/26/90, #ADA was signed into law that prohibits discrimination of individuals with disabilities. Today, while we celebrate milestones that have brought us this far, we recognize that we still have a long way to go.
Have you purchased your tickets to our Waves of Hope Wine Tasting event? Join us for a night to remember while supporting our work to bring life-saving therapeutics to patients left behind. Visit our website in our link in bio for sponsorship opportunities & to purchase tickets.
Happy #disabilityPrideMonth! The month of July is dedicated to celebrating #disability as an integral part of one's identity, and it provides an opportunity to share the unique experiences of the disabled community. Gain a better understanding of life with disabilities!
The #ADA was signed into law 23 years ago turning July into Disability Pride Month. During #DisabilityPrideMonth, we raise awareness & reflect on the history of disability rights. What are you doing this month to help raise awareness for #disabilityrights?
Nearly $300,000 was raised during the 33rd annual Mirabito Golf Classic in Syracuse NY. Thank you @Mirabito Energy Products for choosing CRD again as one of your beneficiaries! Check out some of the photos from the golf classic. #fundraiser #rarediseaseawareness #beneficiary
Check out @CureRareDisease's latest newsletter! #genetherapy #drugdevelopment #raredisease
Check out @CureRareDisease's latest newsletter! #genetherapy #drugdevelopment #raredisease
Did you know in vivo testing plays a vital role in #drugdevelopment? By conducting tests within living organisms, we can better understand how potential treatments interact with biological systems & test their safety & efficacy before they reach patients. Read more in our blog.
Have you checked out CRD's merch collection yet? From trendy apparel to stylish accessories, every purchase supports groundbreaking research. Don't miss out, head to our website and grab your favorites now! #ShopForACause #cureraredisease #rarediseaseawareness
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150 Followers 117 Following Coffee Addict | Auntie | German | Pasta enthusiasts | Boomer | Aquarius | Gamer | Wine Lover | 90's Girl | Shrug Dealer | ArtistWorld Duchenne Awaren.. @DuchenneDay
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1K Followers 508 Following 💜 Twitch Partner 🔪 Indie Horror Game Enthusiast ✉️ [email protected]Ever wondered what a gene really is? A gene is a section of DNA that is described as the basic unit of inheritance. Genes have information coded in the form of nucleotides, which are the building blocks of DNA and RNA. #raredisease #dna #genetherapy #genereplacement #research
Join us for the We Will for William Casino Night, benefitting @CureRareDisease, on 11/4/23 in Medford OR. Casino games will include roulette, poker, craps & blackjack, & guests will have chances to win raffle prizes including photoshoots, wine, a two-night stay & more! #duchenne
CRD's August newsletter is out and packed with new opportunities to learn about our research projects and upcoming fall events. Check it out and join us at an event near you!
Join the inaugural sporting clay charity shoot at One In One Hundred Gun Club on September 16, 2023 in Lumberton TX to benefit @CureRareDisease. Register or donate now. #clayshoot #rarediseaseawareness #duchenne #genetherapy #fundraiser #dmd
Don't miss the @KindnessOverMD Benefit this Saturday at @cptlawrencebeer in Elmsford, NY in honor of Conner & all the boys with #Duchenne MD. Tickets include an open bar, DJ, incredible food from over 15 local restaurants, prizes & the chance to make a donation to a great cause!
Join us on Wednesday, 9/20, for a webinar discussion with Dr. Noah Weisleder, PhD, and Rich Horgan as they provide a research update on #MyoTRIM - a non-viral, protein-based therapy - & its potential applications for the treatment of various forms of MD. #genetherapy
It's #WorldDuchenneAwarenessDay & today CRD is celebrating the community that inspires us - the researchers, families & boys that are breaking down barriers. Together, we will continue to create a better future for everyone impacted by #Duchenne. #WDAD2023 #WDAD #breakingbarriers
Last week, @SenBlumenthal visited CRD's lab space in Woodbridge, CT to see the impact of the designated federal grant on the renovations. We appreciate his support in helping to secure the critical funding for this project, which will help advance CRD's R&D. #rarediseaseresearch
Embracing the slopes & #breakingbarriers with William during #DuchenneMD Awareness Month! Kati Falger's heartwarming blog highlights the power of family, the support of organizations like @OASbend, & the determination to keep enjoying the great outdoors despite life's challenges.
The Curran family raised $411,000 at their @KindnessOverMD Annual Benefit at the @cptlawrencebeer this year. "Every step we take, every dollar we raise- brings us closer to our goal & we can’t stop and won’t stop because time is muscle and patients are waiting!" - Jess Curran
In honor of #LGMDAwarenessDay on 9/30, this month's researcher spotlight features Dr. Nick Johnson from the Johnson Lab at @VCUHealth, who partnered with CRD to develop a gene replacement therapy for the TCAP gene. Mutations result in an ultra-rare form of MD known as #LGMD2g.
This week, the results of our study on the CRD-TMH-001 clinical trial were published in the @nejmunofficial. Terry's death was a tragic outcome, but we hope that sharing the learnings from his case helps to advance safe, efficacious treatments for patients in the future.
Meet Zhenya Ivakine, PhD from the Ivakine Lab at The Hospital for Sick Children (@SickKidsNews) Canada. In partnership with CRD, the Ivakine Lab, in close collaboration with the Cohn Lab, is advancing genome-editing strategies to correct genetic mutations causing #DuchenneMD.
One year ago, Terry Horgan’s life-long battle with #DuchenneMD ended. Every day since, our team has continued to move science forward for ultra-rare disease patients in his honor. His bravery & resilience remains the inspiration for our community & the patients still fighting.
Here is a letter from Terry's Parents: liebertpub.com/doi/10.1089/hu…
One year ago, Terry Horgan’s life-long battle with #DuchenneMD ended. Every day since, our team has continued to move science forward for ultra-rare disease patients in his honor. His bravery & resilience remains the inspiration for our community & the patients still fighting.
We are grateful to our CRD community for your heartwarming gestures in remembering Terry, who left us a year ago yesterday. Special thanks to the Sharp family for their touching blog tribute to honor Terry's memory. #duchenne #duchennemd #cureraredisease #raredisease
The Bryan Family hosted their second annual Bryan Boys Communi-Tea 5K raising $17,570 in honor of their two sons, Sawyer & Wesley! All proceeds benefit CRD's work to develop life-saving genetic medicines for ultra-rare diseases. #rarediseaseawareness #genetherapy #duchenne #dmd
The We Will for William Online Auction benefitting CRD begins today through the 22nd & you won't want to miss it! From a 3-night AirB&B stay, tickets to Lauryn Hill's 25th Anniversary Tour & tickets to a Wildlife Safari, there is something for everyone. #raredisease #genetherapy
Check out this great TV interview featuring the inspiring Bryan Family and their unwavering fight against #Duchenne muscular dystrophy. Thank you to Dynamic Spine & Neuropathy for continuing to support Bryan Boys for Hope & @CureRareDisease. #rarediseaseawareness #genetherapy
Calling all #Whiskey Lovers! The Second Annual SETX Whiskey Festival tickets are on sale now. All proceeds will support CRD. Buy your tickets now before they sell out. #Whiskeylover #rarediseaseawareness #fundraiser #Whiskeyfest #setx #setxwhiskeyfest #cureraredisease #dmd