Really hopeful for any good results from this study, my mom just was diagnosed with als only a few days ago.. she's only 58 and I can't begin to describe how heart broken I am over this. It's hard to sleep at night knowing the fear and sadness she's experiencing, remembering all the amazing times we've shared. I'm terrified and am searching everywhere I can for answers... So here's to hope. I've subscribed to your channel and will be paying very close attention. Thank you so much for all your hard work and everything that you do, I can't express enough how grateful we are for even the smallest shred of hope
Looking forward to hearing correlation results between IGFBP7 and ALS progression speed. Hopefully that can kickstart a trial to create a treatment to increase IGF1 in patients with ALS! Really struggling physically and counting on you, Dr. Bedlack!
What supplement might inhibit IGFBP7 ? It has been studied before for NAFLD and heart and same conclusion that reducing expression has improved outcomes.
My friends struggling with ALS . It’s been a year and 4 months . If someone have any informations about therapy and a contact of the person on the video . Am ddesperating to help my friend . Please help. God bless
How about you guys find a treatment rather than putting effort in these rare reversals. What happened to all the money put into this disease and right to try back in 2021? It's almost 2025 and I see shit worth of progress on this disease.
We have to keep studying this disease from all aspects. The money they put in has resulted in a ton of progress! We have phase 3 trials starting and currently happening with Pridopidine, CNM-Au8, PrimeC, and phase 3 trial planning with NurOwn. These have all shown much better efficacy results than the currently approved drugs by the FDA. But there needs to be even more effort put into the ALS reversals. Drugs and medications (treatments) are only showing effectiveness in slowing the progression but not actually reversing symptoms or improving function. If they do show these symptom improvements, they are just as rare as these reversals. They also come with pretty uncomfortable side effects that drastically reduce a patients quality of life. Sure, it might slow the progression down by 2-6months, but it must feel terrible losing complete muscle function limb by limb slowly each day, but now I have diarrhea or headaches on top of it to give me an extra 2-6 months to live. I feel like the biggest issues with ALS research is that there is not enough awareness being brought specifically to these ALS reversals and to ALS awareness in general. You will still find people that have no idea about what the disease is. To add, there are great healthcare providers and some that are lackluster in their performance. The treatment approach needs to be more uniform across the board with how doctors are interacting with their patients. ALS is in such an unknown stage still to where we only have a handful of viable clues about what actually causes this disease. Patients should be able to know about these reversals as well as all types of alternative treatments. There is literally nothing to lose. The end result is still the same as it has been for the last 200 years. I don’t believe in “false hope”. Any hope when it comes to this disease is better than nothing. Otherwise, all life with ALS is a constant reminder to look at your calendar and count down the days you have left and whether or not you will be lucky enough to get to your expected “Time’s Up!” date. The FDA really needs to be restructured to handle experimental drugs for rare diseases much better. It seems pretty crazy to me that there is not enough emphasis on getting patients access to drugs that show potential benefit to a 100% terminal disease. There are constantly trial eligibility changes from sponsors that result in trial start date delays that can be up to 4 months. Delays this serious seem very avoidable. I apologize if this seems like lashing out. Just very passionate about the subject. Basically, we need more fundraising and awareness being spread so that we can have another monumental movement to keep the ball rolling.
Really hopeful for any good results from this study, my mom just was diagnosed with als only a few days ago.. she's only 58 and I can't begin to describe how heart broken I am over this. It's hard to sleep at night knowing the fear and sadness she's experiencing, remembering all the amazing times we've shared. I'm terrified and am searching everywhere I can for answers... So here's to hope. I've subscribed to your channel and will be paying very close attention. Thank you so much for all your hard work and everything that you do, I can't express enough how grateful we are for even the smallest shred of hope
Looking forward to hearing correlation results between IGFBP7 and ALS progression speed. Hopefully that can kickstart a trial to create a treatment to increase IGF1 in patients with ALS! Really struggling physically and counting on you, Dr. Bedlack!
Sir could you please make a video on stem cell therapy in ALS patient
What supplement might inhibit IGFBP7 ? It has been studied before for NAFLD and heart and same conclusion that reducing expression has improved outcomes.
My friends struggling with ALS . It’s been a year and 4 months . If someone have any informations about therapy and a contact of the person on the video . Am ddesperating to help my friend . Please help.
God bless
Can you please list the contact information for the energy healer?
I am desperate for help 💔
Dr. Bedlack has mentioned in other video that the energy healer has passed away.
Do you know why don't increase your video views?
How about you guys find a treatment rather than putting effort in these rare reversals. What happened to all the money put into this disease and right to try back in 2021? It's almost 2025 and I see shit worth of progress on this disease.
We have to keep studying this disease from all aspects. The money they put in has resulted in a ton of progress! We have phase 3 trials starting and currently happening with Pridopidine, CNM-Au8, PrimeC, and phase 3 trial planning with NurOwn. These have all shown much better efficacy results than the currently approved drugs by the FDA. But there needs to be even more effort put into the ALS reversals. Drugs and medications (treatments) are only showing effectiveness in slowing the progression but not actually reversing symptoms or improving function. If they do show these symptom improvements, they are just as rare as these reversals. They also come with pretty uncomfortable side effects that drastically reduce a patients quality of life. Sure, it might slow the progression down by 2-6months, but it must feel terrible losing complete muscle function limb by limb slowly each day, but now I have diarrhea or headaches on top of it to give me an extra 2-6 months to live. I feel like the biggest issues with ALS research is that there is not enough awareness being brought specifically to these ALS reversals and to ALS awareness in general. You will still find people that have no idea about what the disease is. To add, there are great healthcare providers and some that are lackluster in their performance. The treatment approach needs to be more uniform across the board with how doctors are interacting with their patients. ALS is in such an unknown stage still to where we only have a handful of viable clues about what actually causes this disease. Patients should be able to know about these reversals as well as all types of alternative treatments. There is literally nothing to lose. The end result is still the same as it has been for the last 200 years. I don’t believe in “false hope”. Any hope when it comes to this disease is better than nothing. Otherwise, all life with ALS is a constant reminder to look at your calendar and count down the days you have left and whether or not you will be lucky enough to get to your expected “Time’s Up!” date. The FDA really needs to be restructured to handle experimental drugs for rare diseases much better. It seems pretty crazy to me that there is not enough emphasis on getting patients access to drugs that show potential benefit to a 100% terminal disease. There are constantly trial eligibility changes from sponsors that result in trial start date delays that can be up to 4 months. Delays this serious seem very avoidable. I apologize if this seems like lashing out. Just very passionate about the subject. Basically, we need more fundraising and awareness being spread so that we can have another monumental movement to keep the ball rolling.