“It’s more of a 12-month expected lifespan. So she started to have symptoms last August, so 12 months will obviously make it this August,” Mauriello explained. “She’s lost functionality increasingly. She has a hard time now walking more than 20 or 30 feet … She can no longer really talk at all.”
“She was unfortunately not even able to sign her name, which was a really grim milestone. That was a bad day,” Mauriello said. “It’s a bad condition.” While Mauriello feels devastated by this he also understands the difficulty facing drug manufacturers. The family was able to ask for access thanks to, a bill passed in 2018 that allows patients to ask to receive experimental drugs if they cannot be involved in the clinical trial. But companies can still deny a request no matter how life-threatening the disease is.
The FDA’s drug/treatment approval process is a joke. Pushing things through without true safety studies, then denying ALS patients access to treatments that have a decade of studies under their belts. The FDA is killing ppl. Nurown is a prime example.
This is such an important story. There's a high likely hood Chance4Lisa might not make it until Mid-July. biogen do the humane decent thing and randomize Lisa into the trial. She is not asking for special treatment. DoTheRightThing Tofersen4Lisa Mid-July is 2Late4Lisa
Lets make it happen!!!!!
This is a picture of my grandsons. Their mother is 34 years old, a military wife and has ALS. Can you tell my grandsons that the FDA didn’t approve their mom’s HOPE of NUROWN?
DyingWaiting
.Thank you for highlighting this story. ALS patients are calling for congressional hearings to address the FDA’s questionable handling of the disease. It’s time ALS was treated like what it is - 100% terminal and heterogenous disease. We need accountability.
Thank you for covering this important story Why are people dying of a disease we have had identified for 150+ years? Where is our medical research and regulatory process failing them? How can we fix it, fast?
Thank you for helping to bring attention to this story. ALS is a beast that no one should ever have to fight, but allowing access to drugs and therapies in trial would provide some hope. Congress and the FDA need to step up and do the right thing. pALS are DyingWaiting
Thanks for sharing this story. My husband passed away at age 38 from this disease. It was absolutely heartbreaking when the doctors told him there was nothing they could do for him. It’s truly sad that the fate of ALS patients are in the hands of people who don’t seem to care.
Thank you for bringing awareness!! ALS runs in our family.When my husband of 40years passed 3 years ago,we were just told “sorry; get your affairs in order. “Meaning-no hope -just die. And, he did.He has 5 sisters 1 brother,3 children,5 grandkids- all have a 50/50 chance of ALS!
Thank you so much for publishing this story and giving a voice to ALS!
thanks for sharing this. ALS community needs help and support! DrugsinBodies DyingWaiting
Come on politics and people share the covid scene with ALS
stevens_nation Chance4Lisa Heartbreaking, yet inspiring story!! Thanks for sharing! Prayers & Blessings! 👍☺️🙏💪❤️
Thanks for putting out there what all ALS warriors are needing.... options!
, please bring Chance4Lisa on your show to highlight this very important story. biogen's refusal to grant access is inhumane. ALS ExpandedAcess Terminal patients need science to meet humanity. Unfortunately right now it doesn't, but you can help change this.
Todayshow Like a fire destroying a structure, ALS is destroying neurons every single day. Once gone, they're gone. Tofersen is a blessing to so many, stopping damage done by the mutation. But it doesn't repair neurons that are dead. In ALS, delay = death. DyingWaiting
ALS is a death sentence, there is no “long term.” Give this woman and the many others currently living with ALS a chance to decide what they put in their bodies! When we can only expect the worst, anything else, even if it only extends life by a few months, is a WIN! 💔
This is my friend Mayuri Saxena's story. Biogen has denied her request for compassionate use 4x. Tofersen could have helped her. Using her eye gaze technology, she is fighting for legislation to be reintroduced to help her get access to drugs.
Thank you for publishing this story!
Imagine a doctor refusing to give a Stage 4 cancer patient access to chemo for 4 months. Would we think that was humane? That's the equivalent of what Biogen is doing to Lisa & appx 250 others with her rapidly progressing genetic form of ALS. DyingWaiting for DrugsinBodies
Thank You 🙏🏼
Please look into how patients have been treated. The National ALS Association blocks patients for asking for help. They are not belong. tellthestory
Thank you MissMeghanMack & Today Show for this article about Lisa. She's fighting for her life. Chance4Lisa is not asking for special treatment. She is willing to be randomized into the trial drug and have the same odds current study participants had Mid-July is 2Late4Lisa
Lisa deserves to live! Thank you Today Show for highlighting her plight! This needs to be known by everyone in US. TodayShowRocks BIOGEN DoTheRightThing Tofersen4Lisa Mid-July is 2Late4Lisa
Thank you, . Please continue to cover Chance4Lisa and the inhumane practices of biogen.
Thank you for highlighting this amazing family and what Lisa and TOO many other ALS sufferers are enduring. Please keep focusing on Biogen and helping them recognize that what they are doing is inhuman and plain wrong.