"By the time that you watch this I will no longer be here"
We wanted to share Rob Burrow's poignant final message with you, recorded before his death for a special BBC documentary 'There's only one Rob Burrow'.
The Rugby League legend will never, ever be forgotten ❤️
Thank you, Emma Terry for being our featured table guest today! Emma was Miss #UAB 2023 and is the current Miss Jefferson County. She served as Miss Alabama’s Teen 2021. She works to increase awareness of ALS in honor of her grandfather’s ongoing battle with Lou Gehrig’s Disease.
Last week, Emma Terry, Miss Jefferson County 2024, arrived at the Birmingham VA Medical Center with one goal in mind, to spread love to as many Veterans as she could reach.
Click the link below to continue reading our story on her visit.
https://t.co/ExIXK9YsjI
@SenKatieBritt as the FY 2024 budget is coming to fruition would you please fully fund Act for ALS which gives $75 million for EAP.Did you know more than 1/2 the people with ALS don't qualify for trials & EAP is their only hope!Thanks from an impacted ALS family & #RollTide
Happy #FunFactFriday! The amount of treatments that are FDA-approved for ALS have doubled in the last year! For many years, there were only two treatments for ALS! There are now four drugs FDA-approved for ALS!
It’s #FunFactFriday! The average life expectancy with ALS is 2-5 years. However, each person living with ALS has a different experience. For example, my grandfather has had ALS for 20 years. #stompoutals
This week’s ALS fact is a little more personal- I’ve never heard my grandfather’s voice. ALS took his voice, our potential memories, and an essential method of communication. That’s why I use my voice against this disease! #funfactfriday#stompoutals
QALSODY (tofersen) is now FDA-approved! It treats ALS in those who have a mutation in the SOD1 gene. This drug is designed to target RNA produced by the mutated gene and stops toxic proteins from being made. For more information, check out my website! #factoftheweek#stompoutals
I am partnering with The Outlet Shops of Grand River in Leeds to host the Drive Out ALS Cruise In! It has been such a rewarding experience to organize this event and see how it impacts the ALS community. Don’t worry about making plans on May 13th because you’ve already got some!
#FunFactFriday ALS is a progressive disease. Each person’s timeline is different, though. Symptom onset is unique for every person. It is incredibly rare for someone to experience an improvement in function that lasts longer than 12 months. #stompoutals#als#stepsforstewart
Great news on #Nurown AdComm being granted by the #FDACBER today.
It's time now to fight for approval. We have known that #NurownWorks for years. So many have died fighting for Nurown approval and access.
It's time to get Nurown approved & give HOPE to all with #ALS.
#Nurown WORKED for my mama - thx to EAP: my family and the #ALS community got to soak up 2 more precious summers of @sandymorris333 magic💫 #NurOwn worked in the final phases of #ALS for my person, I wonder the effect this treatment might have on a newly diagnosed #PLWALS ?! ✨
Grandy’s blood pressure was back to normal today and his oxygen was at 98% 🤍 sometimes it’s the little things like a normal levels check that can make or break your day! Today was a good day! #stompoutals#itsthelittlethings
Why is ALS so hard to diagnose? ALS does not have a biomarker! While EMG testing can assess the health of nerves, there is no test that says you are "positive" or "negative" for ALS. There is not a measurable substance that is indicative of ALS. #factoftheweek#stompoutals
I can't believe the @people magazine with our story, our fight, and @noc_film by @misskph is here!
As you get your copy, please reply with a photo of you with the article using the hashtag #DefyingTheOdds.
Can't wait to see all the replies and raise awareness of the ALS fight!