ALS United North Carolina 2024 Research Update with Dr. Richard Bedlack from Duke ALS Clinic

[@MarthaCanha]

Thank you Dr. Bedlack, for all the dedication and efforts you’re putting to help all the ALS patients; including me; I was diagnosed last year, you ‘rein my prayers and all the scientists who are working so hard to stop this horrible disease. GOD bless you 🙏🙏🙏❤😢

[@sheilawest363]

Thank you so much. My dad past away with ALS. I'm being tested. For symptoms of the same. Thank you again for everything you do!!

[@Youlaughyoulosehahahaha]

How are you being checked? My dad also has also its been a year now….. we don’t know what to do next

[@DanGreer-c1r]

I'm on a conivore diet it helped me so much I was in a wheel chair now walking 5 blocks no assistance an talking better breathing better dreasing my self gaining muscle

[@mariannemay3317]

Wow, congratulations! Excellent to hear your success. All the best with continued healing. 👍🙏

[@MosarofKhan-z2l]

Sir Plesse help me my name is Mosharraf I'm From Bangladesh I'm suffering MND ALS disease two years I'm 35 year old please help me Sir

[@Linet-o3i]

Which diet help me pls

[@Donnie-hf5du]

Thank you Dr bedlack for your fashion and study with ALS. I dress with lots of color especially orange

[@JoeFunderburk-uy7ut]

My son diagnosed at age 50, now age 64. Been taking L-Serine for13 years.

[@karieanne25]

Thank you, Dr Bedlack, for all you are doing. I asked a physician who worked with you at Duke if you are ‘for real’….her reply: ‘He is an excellent doctor…..One of the very best.’ Thank you for all you are doing….Hurry! Hurry!❤

[@juliedawn4271]

My diet is key . I eat full fat everything. Good animal fats no processed foods and no sugar

[@virginiahobby3726]

I need to back to that lifestyle. I felt so.much better.

[@Donnie-hf5du]

No sugar here and only good proteins 7 years

[@mariannasharp3662]

​@@Donnie-hf5du, I'm newly diagnosed and I'm thinking about going Keto and heavy on Carnivore.

[@roxannem2208]

I know 63 people with “ALS” who got properly tested for Lyme disease. 59 of them tested positive for Lyme and coinfections. Many of these people are getting better by treating Lyme. When are we going to take Lyme seriously as a cause of als symptoms? How many people with lyme are misdiagnosed with als? My sister in law was one of them.

[@mariannemay3317]

Thanks for pointing this out. Lyme certainly seems to be worth looking into, the challenge is finding someone qualified and capable. My pALS asked his PCP for a referral to a Lyme Literate Doctor, and the PCP seemed as though he didn't know what we we asking. We explained that we keep hearing the many, many with ALS have an underlying problem with Lyme and we wanted to pursue that further. He then got on the phone, while we were in the office, to a colleague, a supposed ALS expert and asked if there was any connection between ALS and Lyme, and we could actually hear the response of NO. 😕 The PCP then told he couldn't help and to get the referral from the Neurologist. Guess what, the Neurologist said he couldn't help and that we should get the referral from the PCP.🤔😳 We're still looking to pursue the Lyme angle, but finding it challenging. So glad to read your comment though, as it emphasizes the need for checking into Lyme. And totally agree, WHEN is the medical community going to finally take Lyme seriously for those with ALS?

[@sullustanmel]

Yup. Amy jarmallilo has 4 ALS reversals under her belt. 4 out of the known, medically documented cases bedlack mentions. She treats Lyme and other underlying infections with peptides.

[@virginiahobby3726]

That seems mathematically impossible.

[@fowlerfitness592]

@@virginiahobby3726out of the 48 known *

[@roxannem2208]

@@virginiahobby3726 why would that be mathematically impossible?

[@LiberaTeTutemetExInferis]

It seems lakes are indeed a risk factor , Mascoma Lake in Enfield, New Hampshire is one of those als clusters, living within half a mile of the lake raises the risks of developing als by 25 times !!! The proposed mechanism as mentioned by Doctor Bedlack is a neurotoxin BMAA {Methylamino-L-alanine}, generated by an algae, cyanobacteria (blue-green algae).

[@katrinajensen2683]

SPG302, nerve regrower, being trialled in Australia since March 2024, 24 on it nationwide. Spinogenix. Orphan drug status. Developed in US.

[@karieanne25]

Very excited about this new drug!❤

[@RuudBrood-hu6jc]

@@karieanne25 What do you know about it Karrie ???

[@philipwebb1617]

I was diagnosed with ALS in Feb. I also have cystic fibrosis and use to attend Duke clinic. I was instrumental in my cf of the use of 3 different IV drugs all at once to help get better prior to my transplant. I'm wondering if 3 different medications would help with ALS.

[@juliedawn4271]

I have been taking L serine for the last 5 years. My progression is now slow

[@mariannemay3317]

Great to hear this!👍 Curious, what is the source of your L-serine? And, how much do you take?

[@juliedawn4271]

@@mariannemay3317 you need to do your own research. What works for me may not work for others. I source mine from the U.S as I need powder form.

[@mariannemay3317]

@@juliedawn4271 totally understand doing own research, I am most definately doing that, but just looking to see what's working for you? I understand everyone is different but it helps to get info from someone who is seeing good results.

[@Donnie-hf5du]

Great to hear of your slow progression

[@drewcwsj]

Last week my Neurologist gave me an initial diagnosis of a degenerative nerve disease. I am waiting on a nerve conduction study to be scheduled but I just found out my estranged father died from ALS about twenty years ago. What should I do based on this?

[@juliedawn4271]

2014 I was diagnosed just as that Ice bucket challenge started . People still asked me what MND was.

[@katrinajensen2683]

Total strangers recognise me from my TV news presentation ( first on the SPG302 trial) and tell me that thanks to me they know I will die in 3 years. Love that publicity....

[@RobdeKlerk-qg6lc]

​@katrinajensen2683 How does this new medication works for you my friend??

[@sullustanmel]

Are you looking into Dr Dayan Goodenowes work with plasmalogen replacement therapy for ALS? They’re seeing tremendous results

[@mariannemay3317]

Thanks for sharing this, taking a look at the video now.👍

[@juliedawn4271]

The gut is our second brain. I grow my own kefir from grains.

[@parwinomar8804]

What’s the difference between PLS and ALS . ?

[@davidderoux7552]

ALS affects both, UMN and LMN. PLS affects only UMN but it may progress in ALS over time.

[@randibrofsky5231]

Thank you my sister was just Diagnosed with bulbar Als in south Florida and was positive for the sod1 any recommendations for South Florida groups?

[@sammyp1556]

Toferson!

[@christineweitz5747]

My mom was diagnosed with bulbar ALS 1 year ago, she’s 86. She’s had a feeding tube for 9 months now & can’t talk.

[@mz.trezena4304]

I have ALS disease

[@aghaagha-et3if]

What a new treatment please tell me als mnd iam young please 😅help me

[@davidderoux7552]

The cure, if it ever truly exist, is many many years away... they said they know the cause of ALS in 5 to 10% of cases, some genes seems to be responsable somehow.... no real treatment available after all this time...what about the rest?

[@RobdeKlerk-qg6lc]

What is many years my friend??

[@althe]

Yes, the science does say cut sugar - drastically. Exactly like before als became a problem. Absolutely it says cut sugar for essentially every single disease, just possibly not als.

[@mariannemay3317]

@althe, I haven't searched for the study that Dr. B referenced that took place in Switzerland regarding high glucose diet for ALS. Hope to find it to hear what he's talking about. But, most others are convinced a no, or extremely limited sugar, and low carb diet is proving beneficial. Check out research neurologist Dr. Matthew Phillips on KZbin, he has some encouraging and compelling info on the benefits of a Ketogenic or Carnivore Diet for helping to improve many disease states. Definitely worth a look. Hope you find this helpful.

[@joesixpac8710]

@@mariannemay3317they recent ALS news. It has an article and link to the report referenced that was presented in Europe in late 2023. Say high carbohydrates and sugar are key to longer survival and slower progress. I agree however others indicate that keto or carnivore diet may have positive impact. I wish the science was clear on this issue

[@filomenaheartsonsleeves3234]

I’d love to know how Dr Bedlack can discredit ppl who are reversing this disease! I think it’s all about the brand of Bedlack rather than genuinely helping ppl. If u really cares u would collaborate NOT discredit!

[@mariannemay3317]

I agree with you! Unfortunately, it seems Dr. Bedlack is married to BIG Pharma and that's why he's not actually able to help people with ALS. 😕😔 He believes there is a way to help, but he seems too entangled with the pharmaceutical companies to have the impact he should have by this point in his career. It's easy to discredit some of the things that people have found help with if it's going to negatively impact your bread and buter.😞

[@AJ-ey4ev]

He’s a product of the times. Prob one of the most untrustworthy looking doctors I’ve ever seen minus the movie idiocracy. His thoughts on the subject compliment his image If it looks like shit and smells like shit … it’s prob shit.

[@Donnie-hf5du]

Stay and think positive

[@whiteclouds26]

U no what I same thing in my head sometimes is really helping these people or is it for brand

[@AJ-ey4ev]

@@whiteclouds26the black rimmed glasses give him away as a guy who wants to look smart …. And they are the boldest black rimmed glasses I’ve ever seen . Never trust a male who wears black rimmed glasses routinely