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KEY POINT IN ALL THIS .. after initial NAION attack .. patient IMMEDIATELY sought treatments .. IMHO, probably saved 50% of his vision in left eye --- On Saturday, May 10, 2025 at 12:05:31 AM EDT, Russ Poter via groups.io <russpoter@...> wrote: The patient in the YouTube video from Stanford Medical https://medicalgiving.stanford.edu/news/how-vision-loss-helped-me-see-the-world-in-a-new-light.html On Saturday, May 10, 2025 at 12:03:29 AM EDT, Russ Poter via groups.io <russpoter@...> wrote: DB .. this is the print version of that YouTube video .. https://medicalgiving.stanford.edu/why-giving-matters/gaining-insight-into-vision-loss.html On Friday, May 9, 2025 at 04:33:32 PM EDT, Debra B via groups.io <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B

The patient in the YouTube video from Stanford Medical https://medicalgiving.stanford.edu/news/how-vision-loss-helped-me-see-the-world-in-a-new-light.html On Saturday, May 10, 2025 at 12:03:29 AM EDT, Russ Poter via groups.io <russpoter@...> wrote: DB .. this is the print version of that YouTube video .. https://medicalgiving.stanford.edu/why-giving-matters/gaining-insight-into-vision-loss.html On Friday, May 9, 2025 at 04:33:32 PM EDT, Debra B via groups.io <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B

DB .. this is the print version of that YouTube video .. https://medicalgiving.stanford.edu/why-giving-matters/gaining-insight-into-vision-loss.html On Friday, May 9, 2025 at 04:33:32 PM EDT, Debra B via groups.io <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B

Specialists discuss concerns over impact of semaglutide on the eye Specialists discuss concerns over impact of semaglutide on the eye A paper recently published in JAMA Ophthalmology by Hathaway and colleagues at Harvard suggested a potential association between prescribed semaglutide and an increased risk for nonarteritic anterior ischemic optic neuropathy.Semaglutide is a GLP-1 r Repeating .. exercise .. healthy living .. diet .. are good things Unhealthy living .. commonality in premature death and disease

https://www.goodrx.com/hcp-articles/providers/self-prescribing-laws-by-state They want to be HEALTHY

https://www.onlymyhealth.com/breakthrough-trial-finds-weight-loss-drug-wegovy-also-treats-serious-liver-disease-12977830139 https://www.ajmc.com/view/semaglutide-use-could-prevent-up-to-2-million-mace-in-10-years-model-suggests https://onlinedoctor.asda.com/uk/health-benefits-of-semaglutide.html

Hello NAION friends, Reminder about our Saturday Zoom peer support group meeting, hope to see you there! Join us for one hour Saturday May 3 as we meet our NAION friends around the world. Time? Saturday May 3, Zoom Room opens 15 min before your start time). ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM ? Cape Town, South Africa (SAST) 5:00 PM ? Melbourne, Australia (AEST)1:00 AM May 4 ? Aukland, New Zealand (NZST) 3:00 AM May 4 ? Hawa’i, (H§T) 5AM Where? For Zoom Link, click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 Please note with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 Let’s have fun, Debra B (volunteer) debrownstein@... NAION Bilateral since March 4, 2025

https://nypost.com/2025/04/29/us-news/grandma-of-11-and-nj-man-join-growing-chorus-of-ozempic-wegovy-users-claiming-severe-vision-loss?utm_source=nypost&utm_campaign=android_nyp&utm_medium=social

Re: Saturday Zoom, NAION peer support group on May 3. Hello NAION friends, Our first Zoom meeting was exciting, there were many wonderful participants and it was fun to talk with so many NAION people! Some people rreached out to me about an earlier time and a weekend day might be easier for them. So if you are interested and available please join us for one hour on this next Saturday. When? Saturday May 3, Zoom Room opens 15 min before start time. ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM ? Cape Town, South Africa (SAST) 5:00 PM ? Melbourne, Australia (AEST)1:00 AM May 4 ? Aukland, New Zealand (NZST) 3:00 AM May 4 ? Hawa’i, (H§T) 5AM Where? For Zoom Link, click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 Please note with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 Let’s have fun, Debra B (volunteer) debrownstein@... NAION Bilateral since March 4, 2025

Hello NAION Friends, So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025 @ 3:00 PM in California (PDT) corresponding times are ? Mountain Time (MDT): 4 PM ? Central Time (CDT): 5 PM ? Eastern Time (EDT): 6 PM ? London, UK (BST): 11 PM ? Melbourne, Australia (AEST): 8 AM on April 24. The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them. Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.

There is an option to attend a new Zoom meetup for those unable to attend the last one (yesterday). I just want everyone to have an opportunity to talk with other NAION people. We are not alone. I can set it up another Zoom for anytime you might want Saturday or Sunday. I just want help verifying time zones. I live in California but can get up in the middle of the night with no problem. Please let me know if you have any interest directly at my email below. Include your time zone and time preferences. Thank you, Debra B debrownstein@...

Hello NAION friends, You are invited to attend our free NAION peer support group. Please note with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. When? TODAY 4/23/05 Zoom Room opens 15 min before start time. ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 3:00 AM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. Where? Zoom Link click here or click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 We are building a NAION community together. Thank you, Debra B Volunteer debrownstein@... NAION Bilateral since March 4, 2025

Thank you for this correction. I relied on AI to tell me the times and it was mistaken! .Hopefully if there are any other corrections people will find their correct corresponding time! Thank you Ronnie! - On Wed, Apr 23, 2025 at 11:56 AM ronnie landau via groups.io <ronnielandau@...> wrote: You've got UK time as 3am tomorrow. But we're only 5 hours ahead of EDT! So, it should be 11pm this evening for the UK. Please confirm asap. Thanks On Wednesday, 23 April 2025 at 19:51:29 BST, Debra B via groups.io <debrownstein@...> wrote: Hello NAION friends, You are invited to attend our free NAION peer support group. Please note w ith your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. When? TODAY 4/23/05 Zoom Room opens 15 min before start time. ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 11:00 PM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. Where? Zoom Link click here or click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 We are building a NAION community together. Thank you, Debra B Volunteer debrownstein@... NAION Bilateral since March 4, 2025

Eyesight-Restoring Device From Musk Company Earns FDA Breakthrough Designation Eyesight-Restoring Device From Musk Company Earns FDA Breakthrough Designation Elon Musk’s brain implant startup’s Blindsight device could restore sight to the blind "Elon Musk’s brain implant startup’s Blindsight device could restore sight to the blind"

Science Friday is interviewing someone who is blind and discussing how to design accomodations for the blind (April 18). It should be available on the podcast later this week. Anne

Hello NAION friends, Here is a suggested outline for our first NAION Peer Support Group Meeting ON Wednesday, April 23 (in most time zones). I nformed Consent: This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. We can change the format as we go and grow to accommodate the number of participants and what seems to work best. I am new at this Peer Group Support stuff but when I started going bilateral on March 4, a few weeks ago, I knew I needed support a the best way to get is to give it! Thank you all for giving me this opportunity and this sense of community. Zoom opens 15 min before Group start time to give people the opportunity to settle in and hit the ground running, help anyone become familiar with mute and other features such as Speaker View and Gallery View, Chat room which is a great option for questions and resource recommendations. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them. Family members are welcome if over 18 years of age. I went bilateral went bilateral in March so still adjusting and welcome any help and input my email address is: debrownstein@... Welcome Introduction ? Technical Check: Ensure everyone is comfortable with the Zoom platform and can hear and see each other clearly. Use mute when not speaking to minimize distractions. ? Ground Rules: Participants agree to confidentiality, respect, and active listening as core principles for the group. Discussion and Sharing ? Icebreaker Question: Ask some kind o a question like “What is your experience with NAION or what do you want from this NAION Zoom group?” To facilitate sharing and connection. People may wish to share if they have NAION in one eye or both, their NAION time line. Perhaps ihey are not ready to share ant group level and that’s 100% understandable and supported. Allow time for participants to share their experiences and thoughts, ensuring no one dominates the conversation. Perhaps we use a volunteer timer who can alert the speaker at 3 minutes. Next Steps and Closing ? Next Meeting: April 30th same time same link. Discuss frequency and timing of future meetings. Possible to add a Saturday meeting. ? Action Items: Provide any necessary resources or next steps for participants. Anything from the chat room can be addressed. ? Closing Remarks: Thank participants for their engagement and encourage feedback for future improvements. __________________________________________________________________________________________________________ NEW TIMES ???? Please double check you start time. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025 in many time zones but in other time zones it might be on Thursday the 24th., Please, please check corresponding times below because they were changed and corrections confirmed by the World Clock Time Zone ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT, which is 4:00 PM. ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 3:00 AM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. ZOOM LINK The Zoom link to use is: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 ZOOM TIPS and your informed consent required for support group participation. Use mute when not speaking to minimize distractions. Speaker View focuses on the active speaker. Gallery View shows all participants in a grid. Use Chat Room as option for questions, comments and resource recommendations. Lets try to keep sharing to 2 or 3 minutes to not dominate the conversation. Do not give Medical advise or tell people what to do. you can talk about your opinions, ideas and experiences. Be respe

Hello NAION friends, Here is a suggested outline for our first NAION Peer Support Group Meeting ON Wednesday, April 23 (in most time zones). I nformed Consent: This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. We can change the format as we go and grow to accommodate the number of participants and what seems to work best. I am new at this Peer Group Support stuff but when I started going bilateral on March 4, a few weeks ago, I knew I needed support a the best way to get is to give it! Thank you all for giving me this opportunity and this sense of community. Zoom opens 15 min before Group start time to give people the opportunity to settle in and hit the ground running, help anyone become familiar with mute and other features such as Speaker View and Gallery View, Chat room which is a great option for questions and resource recommendations. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them. Family members are welcome if over 18 years of age. I went bilateral went bilateral in March so still adjusting and welcome any help and input my email address is: debrownstein@... Welcome Introduction ? Technical Check: Ensure everyone is comfortable with the Zoom platform and can hear and see each other clearly. Use mute when not speaking to minimize distractions. ? Ground Rules: Participants agree to confidentiality, respect, and active listening as core principles for the group. Discussion and Sharing ? Icebreaker Question: Ask some kind o a question like “What is your experience with NAION or what do you want from this NAION Zoom group?” To facilitate sharing and connection. People may wish to share if they have NAION in one eye or both, their NAION time line. Perhaps ihey are not ready to share ant group level and that’s 100% understandable and supported. Allow time for participants to share their experiences and thoughts, ensuring no one dominates the conversation. Perhaps we use a volunteer timer who can alert the speaker at 3 minutes. Next Steps and Closing ? Next Meeting: April 30th same time same link. Discuss frequency and timing of future meetings. Possible to add a Saturday meeting. ? Action Items: Provide any necessary resources or next steps for participants. Anything from the chat room can be addressed. ? Closing Remarks: Thank participants for their engagement and encourage feedback for future improvements. __________________________________________________________________________________________________________ NEW TIMES ???? Please double check you start time. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025 in many time zones but in other time zones it might be on Thursday the 24th., Please, please check corresponding times below because they were changed and corrections confirmed by the World Clock Time Zone ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT, which is 4:00 PM. ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 3:00 AM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. ZOOM LINK The Zoom link to use is: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 ZOOM TIPS and your informed consent required for support group participation. Use mute when not speaking to minimize distractions. Speaker View focuses on the active speaker. Gallery View shows all participants in a grid. Use Chat Room as option for questions, comments and resource recommendations. Lets try to keep sharing to 2 or 3 minutes to not dominate the conversation. Do not give Medical advise or tell people what to do. you can talk about your opinions, ideas and experiences. Be respe

Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It’s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I’d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!

Hi, I have not tried those things. My understanding is there are zero known and proved preventive or any other kind of treatment, one can only hope. Marc On Thu, Jan 13, 2022 at 6:16 PM GaryGBrown via groups.io <bhmvol@...> wrote: To participate here. I was diagnosed with NAION one month ago. I was at a follow up exam for a series of vitectomies/ retina repair procedures when it was discovered in a vision test. The retina doc ushered me down a few floors to a neuro opthamologist who did a couple of scans and a vision field test and told me a little about NAION. Anyway I have briefly looked through the group posts and I appreciate the info I see posted. I am currently under no treatment except to have swapped my ACE inhibitor and beta blocker to the morning. With no treatments expected I have become interested in supplements and have read with interest the thread on citicoline. Has anyone tried alpha lipoic acid or vitamins B3 or 12? I guess it’s a waste of money and emotion but maybe the cost is worth some hope. Again, thanks for allowing me o participate. I hope I can find something valuable to contribute.

There are similarities between glaucoma and NAION. Areas of mutual interest Glaucoma is 30x bigger than NAION -- more research $$ NAION patients are NOT immune from glaucoma