Founder of the patient-led Speak Foundation NPO, Jesus follower, UVa grad, & rare disease advocate for Muscular Dystrophy! #believeforacure
Joined December 2009
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Kathryn Bryant Knudson retweeted
The “ALS RespCare Course” is a free, accredited US National Online ALS Respiratory Care Course that covers respiratory care for people living with amyotrophic lateral sclerosis (ALS) and related disorders. Learn more at:
alsrespcare.com/homepage.php
Kathryn Bryant Knudson retweeted
Thanks to @RepMikeLevin for cosponsoring the SSI Savings Penalty Elimination Act, bipartisan legislation that raises outdated #SSI asset limits to $10k/person & 20k/couple - indexed to inflation moving forward.
Support the bill 👉: votervoice.net/MDA/Campaigns…
ALT The text "MDA Advocacy thanks cosponsors of SSI Savings Penalty Elimination Act" with a jar of coins labeled "savings."
Kathryn Bryant Knudson retweeted
Carol Abraham, President & Founder of @LgmdAwareness, shares her thoughts on the value of the 2024 MDA Clinical and Scientific Conference: “There is no other conference like this that brings the whole neuromuscular community together in one place." #MDAconference
Kathryn Bryant Knudson retweeted
If prescribed, why should someone living with NMD start ventilation support at night? These are just a few interrelated reasons.
#BreathingMuscleWeakness
#MuscularDystrophy
#NeuromuscularDisease
Kathryn Bryant Knudson retweeted
AskBio is a proud sponsor of The Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting, which will give patients living with limb-girdle muscular dystrophy the opportunity to share their perspectives with the FDA and other stakeholders. Register today.
#LgmdAwareness
Kathryn Bryant Knudson retweeted
If you’re located in the US, these are a few of the unused, consumable respiratory supplies that are FREE to those who live with an NMD (no other condition qualifies), and are in need. See inventory at breathewithmd.org/supplies-p….
#BreathingMuscleWeakness
#NeuromuscularDisease
Kathryn Bryant Knudson retweeted
The 2022 LGMD Global Advocacy Summit is now available to watch on our YouTube channel at youtube.com/watch?v=c4Q76001…! Within the week, YouTube's auto translate features will be available so you can listen to the programming in any language. Thank you for watching!
Kathryn Bryant Knudson retweeted
If you or your loved one reside in the US, live with a diagnosed
NMD, such as a form of Muscular Dystrophy, and have a financial need, apply at breathewithmd.org/requestpul… for one of our pulse oximeters to easily monitor heart rate and blood oxygen saturation.
Kathryn Bryant Knudson retweeted
With Mother’s Day just around the corner, Debra Miller and her son Hawken sat down with the @latimes @dailypilot to talk about their journey with Duchenne and the incredible impact they’ve made on each other’s lives. 💐
lat.ms/3OOLvN8
#duchenneawareness #happymothersday
Kathryn Bryant Knudson retweeted
Has your Neuromuscular Disease care team included lung volume recruitment, also known as breath or air stacking, into your care plan? If not, ask them about it.
#BreathingMuscleWeakness
#MuscularDystrophy
#NeuromuscularDisease
Kathryn Bryant Knudson retweeted
Desde Proyecto Alpha anunciamos nueva acción deportiva. Un torneo de pádel solidario “nunca dejes de moverte” 🎾🎾
Los beneficios se destinarán al proyecto de investigación de historia natural de la #LGMD en el hospital San Joan de Déu @SJDbarcelona_es 💪
entradium.com/events/1r-pade…
Kathryn Bryant Knudson retweeted
JOURNEY IS GROWING | TURKEY AND GERMANY CLINICAL CENTRES OPENED: centres in Giessen and Ankara have started recruiting patients with LGMD2C-R5,LGMD2D-R3,LGMD2E-R4.
More information at the link:
clinicaltrials.sarepta.com/j…
Kathryn Bryant Knudson retweeted
Hoy @LaVanguardia publica un artículo sobre el estreno de "Nunca Dejes de Moverte" Gracias por dar visibilidad a @proyectoalpha_ y a las personas que vivimos la distrofia muscular de cinturas por déficit de sarcoglicanos.
#LGMD #MuscularDystrophy
lavanguardia.com/vida/salud/…
Kathryn Bryant Knudson retweeted
We were thrilled to convene 18 organizations for a meeting of the Neuromuscular #Advocacy Collaborative at the #MDAConference for a discussion on barriers each of our communities face and shared advocacy solutions. By working together, we can create real change!
Kathryn Bryant Knudson retweeted
El documental 'Nunca dejes de moverte' visibiliza a los pacientes con distrofia muscular de cinturas infosalus.com/actualidad/not…
Kathryn Bryant Knudson retweeted
We would appreciate it if you could help us share the trailer of the documentary.
You can follow us on our social media and keep up to date with Proyecto Alpha latest news.
Remember: Move yourself so that they don’t stop moving! 💚💪
@speakfoundation @GenethonFr @gencaticUV
#LGMD
Kathryn Bryant Knudson retweeted
We hear it frequently from adults, “I had no idea my breathing was affected.” You are not alone! It’s important to be closely followed by a NMD care team that can help you proactively evaluate and treat respiratory muscle weakness.
#BreathingMuscleWeakness
#NeuromuscularDisease
Kathryn Bryant Knudson retweeted
#MDA celebrates #LGMDawarenessday with all our warriors living with this disease. #DYK you can receive a free subscription to @speakfoundation #LGMD News Magazine? Check out MDA National Ambassador @girlschronical1 on the cover! thespeakfoundation.com/limb-… @LGMDFoundation #LimbGirdle
Kathryn Bryant Knudson retweeted
Vita Therapeutics announced a launch of $32M to start a clinical trial next year for limb girdle dystrophy... LEARN MORE : tinyurl.com/d3npdu72 #LGMD .@speakfoundation .@kathrynbryant .@ralphyaniz #EmoryResearch .@MDA .@KevinHart fb.watch/6mY0EzFKb6/
Kathryn Bryant Knudson retweeted
AMRA is happily sponsoring the 2021 International LGMD Conference in conj. with the Speak Foundation. AMRA’s whole-body #MRIanalysis can provide precise & reliable measurements of #muscles and fatty infiltration to follow where #LGMD is impacting a body: bit.ly/IntLGMD
