Pennsylvania man battling ALS receives 'p... - Cure Parkinson's

Cure Parkinson's

25,340 members26,642 posts

Pennsylvania man battling ALS receives 'promising' new treatment at Philly hospital - Qalsody, formerly known as Tofersen

Bolt_Upright profile image
9 Replies

fox29.com/news/pennsylvania...

(Guy is in his third year post diagnosis and still working, hunting, and working on his house)

"PHILADELPHIA - There’s a promising new drug for people living with amyotrophic lateral sclerosis (ALS). Recently approved by the FDA, Todd Legg participated in an experimental trial for the new drug at Penn Medicine.

"There’s a lot of people that have no hope, but we do. If we could get that to everybody," said Legg.

Legg, 50, lives in the Scranton area and travels to Philadelphia every month for the treatment called Qalsody, formerly known as tofersen.

The high school math teacher was diagnosed in August 2020 and entered the trial a few months later in October.

"Every 28 days we come down, as I say to my students, I get stabbed in the back," said Legg.

Legg has a rare form of ALS identified as SOD1-ALS. Legg said his mother and aunt died from the disease, and five family members in his generation have the gene mutation for SOD1.

"Battling not only for myself but battling for my family; and my sons haven’t been tested but odds are one of them will have it," said Legg.

"ALS is a neurodegenerative disorder of the motor neurons, so basically these are the motor neurons that connect brains to the muscle. If they degenerate, it’s very hard to move," said Dr. Colin Quinn of Penn Medicine. "Familial ALS makes up about 10 percent ALS overall. SOD1 makes just 20 percent of that. So, that’s actually just two percent of ALS overall, but because it’s a dominant disorder, it’ll run in families."

Dr. Quinn, a neuromuscular neurologist, has participated in 15 experimental trials and said it was exciting to see this experimental drug’s affects on his patients.

"I found the drug to be very promising. What we’re looking for is to slow the disease down or ideally stop the disease, and I think in this case we’ve had a really good effect on Todd‘s disease. I think time shows us the drug is working. We’ve had the advantage of treating Todd over two and a half years and he’s still teaching, still hunting, still doing work on his house," said Quinn.

Both Quinn and Legg are hopeful this is only the beginning of promising new treatments for ALS."

Written by
Bolt_Upright profile image
Bolt_Upright
To view profiles and participate in discussions please or .
Read more about...
9 Replies
SilentEchoes profile image
SilentEchoes

Only people with mutant SOD1 can get this treatment, which is BS because everyone with ALS has defective superoxide dismutase enzyme, that's how motor neuron degeneration works. SOD is a detox enzyme. They know it, fALS is the surrogate for sALS. Don't want us dead men walking to figure out we were poisoned.

Thanks for sharing, if anyone cares to look, you'll find links from SOD1 dysfunction to PD and AD too.

Bolt_Upright profile image
Bolt_Upright in reply to SilentEchoes

So you think this treatment might work for others but they are focusing on trials that will get the best trial results?

SilentEchoes profile image
SilentEchoes in reply to Bolt_Upright

Yes, I think it has broad application but is being restricted to a tenuous genetic form of ALS. Genetics load the gun, environment pulls the trigger. Having the SOD1 mutation doesn't mean you will get ALS (incomplete penetrance) you need an environmental trigger such as hypoxia from a toxic exposure to an asphixiant, like cyanide. How would I know that 🤔 I have a SOD2 mutation and ATP13A2 (PARK9) mutation that is also triggered by hypoxia. I'll selfhack, at some point you either decide to save your own life or check out.

It's the middle of the night....I should be sleeping but I have surgery again this morning for the 4th time in 5 months, I'm feeling a little ragey at the medical community right now for withholding information from me and allowing my kidneys to get damaged. I'm dying anyway, right?!

I hope they give me Ketamine again so I can subconsciously work on my cPTSD. I need to get some benefit from anesthesia. ✌🏻

Bolt_Upright profile image
Bolt_Upright in reply to SilentEchoes

Good luck SE. You are in my prayers.

Despe profile image
Despe in reply to SilentEchoes

Best of luck, SE! Kidneys damaged?

Gigi216 profile image
Gigi216

This research says pyruvate protects motor neurons from the SOD1 mutation pubmed.ncbi.nlm.nih.gov/158...

Gigi216 profile image
Gigi216 in reply to Gigi216

Pyruvate is a biotin containing enzyme

ncbi.nlm.nih.gov/pmc/articl...

Boscoejean profile image
Boscoejean

clinicaltrials.gov/ct2/show...

Boscoejean profile image
Boscoejean

My question is why does the article not give more information on the research as in more specifics

alspirestudy.com/en-us/alsp...

You may also like...

Trials coming from Zhittya

Treatment of Parkinson’s Disease and ALS (Motor Neuron Disease or Lou Gehrig’s disease) Dr. Jacobs...

New Horizons but a few obstacles that we must conquer.

research that is showing promise. But with trials only able to have 20-30 participants. This will...