This QURE drama is so entertaining. Whether you support him, or hate him, we can all agree on one thing: @VPrasadMDMPH is a world class quitter. Who else can quit the same job twice in one year? Have the courage to get fired. @adamfeuerstein@US_FDA
President Trump — my mom’s greatest desire has always been to see her kids get better. Even while battling Stage IV pancreatic cancer, she is still fighting for that day.
Please read her letter to you. I ask you to intervene, as you have before, to cut through the red tape and help save my life — and the lives of thousands living with Duchenne Muscular Dystrophy.
Please share this. We need every voice.
@realDonaldTrump@WhiteHouse@JDVance
https://t.co/noniyn8bOh
As the founder and leader of a DMD nonprofit, I meet and speak to patients and parents on a daily basis. They want deramiocel and it gives a lot of hope to patients, me included, starting to face cardiac decline.
Every single day, weekends included, I have been working on helping get this approved. I am going up to bat for the DMD community and myself. I am now publicly calling on, as a patient, for other PATIENT advocacy groups and patients to start to speak publicly about their need and desire to get access to deramiocel.
What I want to make clear is this isn’t just another little drug that will make small improvements, but a drug that can potentially rewrite the prognosis of DMD by adding decades to one’s life. #1 cause of death in DMD is cardiomyopathy and you’re potentially addressing that issue completely in one go. As a patient, it’d be very nice to remove/greatly reduce the biggest cause of death from my things to worry about.
So let’s come together, DMD community, and make this happen. I have big plans to help get this through, but I’ll take more than just me. Let’s go win!
I’m 22. I live with DMD.
A treatment helped me hold onto my independence, graduate college, and live on my own.
Now it might be taken away—not because it failed, but because we’re measuring the wrong things.
Watch my story. Share it. I need your help. #DMD
On Saturday night, the Rochester Knighthawks Connor Fields posted 10 points (3 goals and 7 assists) and 10 loose ball recoveries. This was the first time in his NLL career that he’s posted a 10-10 night, and it is only the 24th 10-10 night in the NLL since 2005.
Fields also had 1 caused turnover last night, which made him only the 6th player in #NLL history to have a 10-10 game while also recording a CTO.
@MattParrino@NFL@nflcommish we gonna make the Browns players dig snow for a few hours before this game too, or are we just totally ignore the logistical nightmare you made for the “home” team?