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

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3 ай бұрын

Dr. Richard Bedlack from the Duke ALS Clinic talks to Dave Shore, CEO of ALS United NC about the research and science that he has been following and the progress he is witnessing. He also talks about his love for the world of fashion. #ALSUnited

Пікірлер: 45

@juliedawn4271 2 ай бұрын

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

@virginiahobby3726 13 күн бұрын

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

@Donnie-hf5du 11 күн бұрын

No sugar here and only good proteins 7 years

@user-qp5qq6nq1n 2 ай бұрын

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 🙏🙏🙏❤😢

@user-zk9xk7sb7r 24 күн бұрын

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 18 күн бұрын

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

@roxannem2208 19 күн бұрын

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 18 күн бұрын

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 18 күн бұрын

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 13 күн бұрын

That seems mathematically impossible.

@fowlerfitness592 13 күн бұрын

@@virginiahobby3726out of the 48 known *

@roxannem2208 7 күн бұрын

@@virginiahobby3726 why would that be mathematically impossible?

@karieanne25 2 ай бұрын

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!❤

@Donnie-hf5du 11 күн бұрын

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

@katrinajensen2683 6 күн бұрын

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

@sheilawest363 2 ай бұрын

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 2 ай бұрын

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

@philipwebb1617 2 ай бұрын

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 2 ай бұрын

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

@sullustanmel Ай бұрын

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

@mariannemay3317 18 күн бұрын

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

@drewcwsj 20 күн бұрын

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 2 ай бұрын

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

@katrinajensen2683 6 күн бұрын

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....

@randibrofsky5231 2 ай бұрын

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 Ай бұрын

Toferson!

@christineweitz5747 Ай бұрын

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.

@juliedawn4271 2 ай бұрын

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

@mariannemay3317 18 күн бұрын

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

@juliedawn4271 18 күн бұрын

@@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 18 күн бұрын

@@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 11 күн бұрын

Great to hear of your slow progression

@aghaagha-et3if 2 ай бұрын

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

@parwinomar8804 19 күн бұрын

What’s the difference between PLS and ALS . ?

@davidderoux7552 12 күн бұрын

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

@althe Ай бұрын

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 18 күн бұрын

@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 KZfaq, 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.

@filomenaheartsonsleeves3234 26 күн бұрын

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 18 күн бұрын

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 16 күн бұрын

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 11 күн бұрын

Stay and think positive

@davidderoux7552 12 күн бұрын

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?