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Date
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

Debra,
Thanks for leading this effort.
I'll be on the call (Tim Trela) with my wife Maryclare who has NAION in both eyes.
The incidents were 3 years?apart with the most recent occurring in July of last year.
I've kept?her familiar with the group.
Tim

On Sat, Apr 12, 2025 at 12:53?PM Debra B via <debrownstein=[email protected]> wrote:
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.?
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

Thank you! Looking forward to the meeting tomorrow.


On Tue, Apr 22, 2025 at 9:54?AM Pamela Chadick via <apchadick88=[email protected]> wrote:
Thank You, Mike! Yes, the first time around set me back for a minute, but my left eye was 20/20 and I really hardly missed a beat. This time is different. Incredibly frustrating. I'm driving around my small town and nervous about that. Difficult for me, as I've never hesitated going anywhere, anytime. Reading is difficult, but I use my iPad and blow everything up, but it's a slow go. What do you use to drive and read?
Pam

On Mon, Apr 21, 2025 at 5:36?PM michael arki via <mikearki=[email protected]> wrote:
Pam,

I also have bilateral NAION, it happened sequentially (2015 & 2022) - the 2022 episode was life changing as it ended my career.? It did drive me to frequent a low vision Specialist in NJ, Dr. Errol Rummel: ?

He was extremely helpful in improving distance (driving), and reading vision improvements.?

Hope this helps¡­. Feel free to reach out to me anytime with any additional questions/concerns.

Thx - Mike?


On Apr 21, 2025, at 9:58?AM, Pamela Chadick via <apchadick88=[email protected]> wrote:

Hello, Unfortunately I will miss the zoom meeting -it's my husband and my 37th wedding anniversary- but I do have a question. Have you been to a low vision clinic, and if so, are there tools there that are helpful for NAION. If so, what are they? I have NAION in both eyes and glasses are minimally helpful.?
Thanks for any information any of you may have.?

On Sat, Apr 12, 2025 at 12:53?PM Debra B via??<debrownstein=[email protected]> wrote:
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.?
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

Thank You, Mike! Yes, the first time around set me back for a minute, but my left eye was 20/20 and I really hardly missed a beat. This time is different. Incredibly frustrating. I'm driving around my small town and nervous about that. Difficult for me, as I've never hesitated going anywhere, anytime. Reading is difficult, but I use my iPad and blow everything up, but it's a slow go. What do you use to drive and read?
Pam

On Mon, Apr 21, 2025 at 5:36?PM michael arki via <mikearki=[email protected]> wrote:
Pam,

I also have bilateral NAION, it happened sequentially (2015 & 2022) - the 2022 episode was life changing as it ended my career.? It did drive me to frequent a low vision Specialist in NJ, Dr. Errol Rummel: ?

He was extremely helpful in improving distance (driving), and reading vision improvements.?

Hope this helps¡­. Feel free to reach out to me anytime with any additional questions/concerns.

Thx - Mike?


On Apr 21, 2025, at 9:58?AM, Pamela Chadick via <apchadick88=[email protected]> wrote:

Hello, Unfortunately I will miss the zoom meeting -it's my husband and my 37th wedding anniversary- but I do have a question. Have you been to a low vision clinic, and if so, are there tools there that are helpful for NAION. If so, what are they? I have NAION in both eyes and glasses are minimally helpful.?
Thanks for any information any of you may have.?

On Sat, Apr 12, 2025 at 12:53?PM Debra B via??<debrownstein=[email protected]> wrote:
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.?
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

¿ªÔÆÌåÓý

Thank you so much for organizing this zoom call.?

It looks like I will not be able to change my work schedule to attend the meeting. Is it possible for you to please record the call? It would be so helpful to anyone who can¡¯t attend.?

Thank you so much for considering my request!

Amanda?



On Apr 16, 2025, at 7:37?PM, Debra B via groups.io <debrownstein@...> wrote:

?
Hello Lake,?
You will see the Zoom Link in the past two emails.?
Zoom Link is in two emails from me subject lines:
¡°Large Type Version of ?1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here)

and

1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here).?

I prefer not to post the link independently because it¡¯s important for us all to read the email so we are familiar with its content.

Hope to see you next week, and thank you for your great question!
Debra

On Wed, Apr 16, 2025 at 2:52?PM Lake Garren via <lakeaprn=[email protected]> wrote:
Will you be posting the Zoom link here??
Thanks,?
Lake Garren
941-321-2977
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

¿ªÔÆÌåÓý

Pam,

I also have bilateral NAION, it happened sequentially (2015 & 2022) - the 2022 episode was life changing as it ended my career. ?It did drive me to frequent a low vision Specialist in NJ, Dr. Errol Rummel: ?

He was extremely helpful in improving distance (driving), and reading vision improvements.?

Hope this helps¡­. Feel free to reach out to me anytime with any additional questions/concerns.

Thx - Mike?


On Apr 21, 2025, at 9:58?AM, Pamela Chadick via groups.io <apchadick88@...> wrote:

Hello, Unfortunately I will miss the zoom meeting -it's my husband and my 37th wedding anniversary- but I do have a question. Have you been to a low vision clinic, and if so, are there tools there that are helpful for NAION. If so, what are they? I have NAION in both eyes and glasses are minimally helpful.?
Thanks for any information any of you may have.?

On Sat, Apr 12, 2025 at 12:53?PM Debra B via??<debrownstein=[email protected]> wrote:
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.?
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

Hello, Unfortunately I will miss the zoom meeting -it's my husband and my 37th wedding anniversary- but I do have a question. Have you been to a low vision clinic, and if so, are there tools there that are helpful for NAION. If so, what are they? I have NAION in both eyes and glasses are minimally helpful.
Thanks for any information any of you may have.


On Sat, Apr 12, 2025 at 12:53?PM Debra B via <debrownstein=[email protected]> wrote:
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.?
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"
Science Friday bit

 

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
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

Hello Lake,?
You will see the Zoom Link in the past two emails.?
Zoom Link is in two emails from me subject lines:
¡°Large Type Version of ?1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here)

and

1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here).?

I prefer not to post the link independently because it¡¯s important for us all to read the email so we are familiar with its content.

Hope to see you next week, and thank you for your great question!
Debra

On Wed, Apr 16, 2025 at 2:52?PM Lake Garren via <lakeaprn=[email protected]> wrote:
Will you be posting the Zoom link here??
Thanks,?
Lake Garren
941-321-2977
Re: Our new NAION Zoom Group starts Wednesday April 23,2025

 

Will you be posting the Zoom link here??
Thanks,?
Lake Garren
941-321-2977
Re: Large Type Version of last email 1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here)

 

I¡¯m in Cape Town, South Africa. I¡¯ll try to join on waking. Thanks for your wonderful efforts

Terry

On Wed, 16 Apr 2025 at 18:06, Debra B via <debrownstein=[email protected]> wrote:
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:

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 respectful and kind.
We are building community?together.

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. ?
Large Type Version of last email 1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here)

 

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:

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 respectful and kind.
We are building community?together.

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. ?
1st NAION Zoom Peer Support Group starts next week on Wed. April 23 (Correct Times, Details, & Zoom Link here)

 

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:

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 respectful and kind.
We are building community?together.

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. ?
Re: Acuvision Acupuncture

 

Thanks for feedback.? Hope to hear from you soon in May!
Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?

 

I¡¯m a medical specialist. I, too have unilateral NAION

I¡¯m not denigrating all the recent posts re acupuncture and supplements, but I must caution all to be circumspect when trying all of the above.?

None of it is, at this time, backed up by reputable science and research.?

I¡¯m cognisant of the attempt to do something.?

The fear of doing nothing and the other eye being inflicted.?

Please guys tread carefully.?

Don¡¯t simply enrich others feeding into your ( our) fears

Dr Terry BERELOWITZ?

On Tue, 15 Apr 2025 at 15:48, ainul wahidah ismail via <eyenull=[email protected]> wrote:
Hi Chiarina,

The doctor only prescribe me with a low dose of vitamin B1, B6 and B12 supplement.? Thank you for your feedback.?



On Tue, 15 Apr 2025, 09:51 Chiarina Blake via , <jc.blake2=[email protected]> wrote:
Here in Australia there has been much discussion about the over use of Vitamin B supplements. Too much of it can become toxic?

On Tue, 15 Apr 2025 at 6:49?am, ainul wahidah ismail via <eyenull=[email protected]> wrote:
Marc,
?
My doctor prescribed me with vitamin B12 .? Just an effort? protect the remaining good nerve
Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?

 

Hi Chiarina,

The doctor only prescribe me with a low dose of vitamin B1, B6 and B12 supplement.? Thank you for your feedback.?



On Tue, 15 Apr 2025, 09:51 Chiarina Blake via , <jc.blake2=[email protected]> wrote:
Here in Australia there has been much discussion about the over use of Vitamin B supplements. Too much of it can become toxic?

On Tue, 15 Apr 2025 at 6:49?am, ainul wahidah ismail via <eyenull=[email protected]> wrote:
Marc,
?
My doctor prescribed me with vitamin B12 .? Just an effort? protect the remaining good nerve
Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?

 

Hi Gary,

Thanks for the update. Did you start the supplements immediately after the episode? May I know how long have you been taking them?

Thanks!

On Tue, 15 Apr 2025, 09:28 GaryGBrown via , <bhmvol=[email protected]> wrote:
Hi Ainul, while I haven¡¯t had another attack, and my NAION seems to be stabile, I¡¯m not sure if the supplements were helpful.? My doctor said my vision would likely improve some after the attack and it has.? He also said it would be unlikely for there to be another incident in that eye.? So, my concern is the other eye. ?
Re: NAION CLINICAL REPORT BY GOOGLE GROK

 

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?

On Mon, Apr 14, 2025 at 4:03 PM, Russ Poter via groups.io
<russpoter@...> wrote:

There are a few ongoing and completed clinical trials exploring various treatments for NAION (non-arteritic anterior ischemic optic neuropathy). These trials investigate different approaches, including intravitreal injections of stem cells, anti-VEGF agents, and surgical interventions, with the goal of improving visual function and safety. [, , ]

Ongoing and Completed Trials: [, , ]
  • Intravitreal Injections: Some trials are focused on intravitreal injections of different substances, such as allogeneic bone marrow-derived mesenchymal stem cells (BM-MSCs), or anti-VEGF agents like ranibizumab or bevacizumab. These injections aim to target the optic nerve and retina, potentially improving vision or reducing the risk of further damage. [, , ]
  • Surgical Interventions: While the Ischemic Optic Neuropathy Decompression Trial (IONDT) found no benefit from surgical intervention, some researchers are still exploring surgical options like optic nerve decompression, transvitreal optic neurotomy, and pars plana vitrectomy. [, ]
  • Other Therapies: Some trials are investigating the use of oral steroids, and others are exploring the potential benefits of platelet-rich plasma (PRP) injections. [, ]
Example Trials: []
  • A Phase 2/3, Randomized, Double-Masked, Sham-Controlled Trial of QPI-1007 in Subjects With Acute Nonarteritic Anterior Ischemic Optic Neuropathy (NAION): This trial, conducted at Stanford Medicine, investigates the effect of QPI-1007 on visual function and safety in patients with NAION. []
  • A Non-Randomized Phase II Clinical Trial for Acute Non-Arteritic Optic Neuropathy: This trial explored the use of allogeneic BM-MSCs through intravitreal injection in patients with NAION. []
  • A Randomized Controlled Phase 2a Study of RPh201 in Previous Nonarteritic Anterior Ischemic Optic Neuropathy: This study investigated the safety and efficacy of RPh201 in patients with previous NAION. []

Generative AI is experimental.
[1]?
[2]?
[3]?
[4]?
[5]?
[6]?
[-]?
[-]?
Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?

 

Here in Australia there has been much discussion about the over use of Vitamin B supplements. Too much of it can become toxic?

On Tue, 15 Apr 2025 at 6:49?am, ainul wahidah ismail via <eyenull=[email protected]> wrote:
Marc,
?
My doctor prescribed me with vitamin B12 .? Just an effort? protect the remaining good nerve
Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?

 

Hi Ainul, while I haven¡¯t had another attack, and my NAION seems to be stabile, I¡¯m not sure if the supplements were helpful. ?My doctor said my vision would likely improve some after the attack and it has. ?He also said it would be unlikely for there to be another incident in that eye. ?So, my concern is the other eye. ?
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