Kathryn Bryant Knudson

Founder of the patient-led Speak Foundation NPO, Jesus follower, UVa grad, & rare disease advocate for Muscular Dystrophy! #believeforacure

[Kathryn Bryant Knudson @speakfoundation]

This Friday is a monumental event for the LGMD community. Join us in the Externally-led Patient-Focused Drug Development meeting for types 2A, 2C, 2D, 2E, 2F, and 2I. Go to https://t.co/6zGWP98fVz Friday to view starting at 10:00 EDT.

[Kathryn Bryant Knudson @speakfoundation]

By partnering with the Speak Foundation, we are aligning clinical excellence with patient-centered infrastructure in a way that truly meets the needs of this community,” said Dr. Nicholas Johnson, neuromuscular neurologist at VCU Health. https://t.co/IrNU4ghyKm

[Kathryn Bryant Knudson @speakfoundation]

@DrMakaryFDA Awesome job!!! Thank you!

[Kathryn Bryant Knudson @speakfoundation]

@SaveAmericaNew Yes

[Kathryn Bryant Knudson @speakfoundation]

@RFK_JR_ I like your statement! Speak up for those without a voice. Our motto at Speak Foundation is to help desperate families living without a cure for LGMD. Be the voice for those who can’t.

[Kathryn Bryant Knudson @speakfoundation]

@united Everytime I have a bad experience with your airline, I am gonna post about it. Waiting over 45 minutes after everyone has ALREADY left the plane for my wheelchair to be brought up. I don’t need to message you; your airline needs to do better for the disabled.

[Breathe with MD, Inc. @BreathewithMD]

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:
https://t.co/wnA2wViR3B

[MDA Advocacy (Archived) @MDA_Advocacy]

Thanks to @RepMikeLevin for cosponsoring the SSI Savings Penalty Elimination Act, bipartisan legislation that raises outdated #SSI asset limits to $10k/person & 20k/couple - indexed to inflation moving forward.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 👉: https://t.co/NxIhxT56WF

[Kathryn Bryant Knudson @speakfoundation]

@united

Please train your staff to understand disabled air travelers. We are in 2024 not 1976.

[Kathryn Bryant Knudson @speakfoundation]

@united Why is it that your staff are never trained well enough for a wheelchair user at the gate? Seriously, I thought you guys were up on the issues. Your whole staff look clueless like they never met a disabled air traveler.😂😂😂😂😂

[Muscular Dystrophy Association @MDAorg]

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 @speakfoundation]

@FLBlueCares see my other post…I don’t think you care and furthermore if this doesn’t get reversed I am going to escalate this on social media and go high with this issue!!!!!!

[Kathryn Bryant Knudson @speakfoundation]

@FLBlue I am pretty shocked you denied my MRI today. I think I would like to escalate this publicly because this is very concerning that my doctor has recommended this diagnostic test.

[Kathryn Bryant Knudson @speakfoundation]

@piersmorgan I believe Harry is standing up for his wife in a system he was forced into as a child. I think they were both very polite in how they expressed their feelings. Harry said the decision to leave was his own.

[Breathe with MD, Inc. @BreathewithMD]

If prescribed, why should someone living with NMD start ventilation support at night? These are just a few interrelated reasons.

#BreathingMuscleWeakness
#MuscularDystrophy
#NeuromuscularDisease

[AskBio Inc. (AskBio) @ask_bio]

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 @speakfoundation]

Our next issue of LGMD News distributes September 1st! In it, you will find everything you need to know about the upcoming LGMD EL-PFDD meeting, as well as an interview with Dr. Jerry R. Mendell! Sign up to receive it at https://t.co/PqTa0By2P4!

[Kathryn Bryant Knudson @speakfoundation]

@Delta @Braves Are you working to become the last place airline? I swear Spirit is better.