Re: Interesting Article

Thanks so much, Adam!

On Sat, May 17, 2025 at 3:48?PM Amy + Adam via <alf.acs=[email protected]> wrote:

Hi all,
?
Not the first time I have posted this, but, if you want to see what research NIH funds, or previously has funded, there is a public resource (NIH RePorter) ?showing the abstracts (summaries) of all funded grant proposals. It is searchable by topic. If you select a specific grant, you can find the publications that were associated with it (many of which are publicly available w/o a paywall). You can also find the amount of funding, and contact information for the investigator.
?
?
There is only a single active grant that is specifically about NAION. However, there are many that are about optic neuropathy in general, optic nerve development/regeneration, and stroke. Advances in any of these could be applicable to NAION. ?
?
Caveat: this resource may not reflect recent cuts. ?
?
There is also a resource of clinical trials ().
?
Best,
?
Adam
?
?
?
From: [email protected] <[email protected]> On Behalf Of Chiarina Blake via
Sent: Saturday, May 17, 2025 1:24 AM
To: [email protected]
Subject: Re: [NAION] Interesting Article
?
Thanks for the article. I did read it and it saddens me to read that there has still been no progress in research?
On Sat, 17 May 2025 at 3:46?am, markhfrancis via <markhfrancis=[email protected]> wrote:
Please see the attached article.
Hope it attached properly.
Regards,
Mark

--

Diane Keasler

DLKeasler@...

Life is the school, love is the lesson.

Re: Interesting Article

#2310

开云体育

Hi all,

?

Not the first time I have posted this, but, if you want to see what research NIH funds, or previously has funded, there is a public resource (NIH RePorter) ?showing the abstracts (summaries) of all funded grant proposals. It is searchable by topic. If you select a specific grant, you can find the publications that were associated with it (many of which are publicly available w/o a paywall). You can also find the amount of funding, and contact information for the investigator.

?

There is only a single active grant that is specifically about NAION. However, there are many that are about optic neuropathy in general, optic nerve development/regeneration, and stroke. Advances in any of these could be applicable to NAION. ?

?

Caveat: this resource may not reflect recent cuts. ?

?

There is also a resource of clinical trials (clinicaltrials.gov).

?

Best,

?

Adam

?

Show quoted text

From: [email protected] <[email protected]> On Behalf Of Chiarina Blake via groups.io
Sent: Saturday, May 17, 2025 1:24 AM
To: [email protected]
Subject: Re: [NAION] Interesting Article

?

Thanks for the article. I did read it and it saddens me to read that there has still been no progress in research?

On Sat, 17 May 2025 at 3:46?am, markhfrancis via <markhfrancis=[email protected]> wrote:

Please see the attached article.
Hope it attached properly.
Regards,
Mark

Re: Interesting Article

#2309

Thanks for the article. I did read it and it saddens me to read that there has still been no progress in research?

Show quoted text

On Sat, 17 May 2025 at 3:46?am, markhfrancis via <markhfrancis=[email protected]> wrote:

Please see the attached article.

Hope it attached properly.

Regards,

Mark

Re: Naion still progressing after 3 month

#2308

So sorry to hear this! What is ESR? My central vision is effected too?

Show quoted text

On Thu, 15 May 2025 at 2:56?pm, eyenul via <eyenull=[email protected]> wrote:

Dear all,

?

I am bilateral. Had my first NAION on right eye? Oct 2023. Had my second NAION of left eye early February this year.? It affected my lower side. According to my doctor the swelling on my left eye has stopped about a month ago. Sadly this week I find that my NAION is still progressing. The scotoma has reached my central vision. I am in Ofthal Clinic now. My blood test, BP and? all clear except my ESR which is high -? 68. Is anyone here facing progressing NAION like me? Kindly share.

Re: Naion still progressing after 3 month

#2307

Thank you for sharing. I will ask my NO.?

Show quoted text

On Fri, 16 May 2025, 09:36 GaryGBrown via , <bhmvol=[email protected]> wrote:

Uveitis can be caused by Herpes Zoster virus (chicken pox, shingles and other diseases). Viruses can cause inflammation. HZ is with you for life after you become infected. HZ can also trigger autoimmune responses in the body. Based on my specific medical history my NO thought HZ could have played a part of my NAION.? Please understand I’m not offering medical advice as my NO was speculating.? It might be worth asking your doctor though. ?

Interesting Article

#2306

Please see the attached article.

Hope it attached properly.

Regards,

Mark

August 2022 Ophthalmic Pearls.pdf

Re: Naion still progressing after 3 month

#2305

Erythrocyte sediment rate. Basically the speed at which red cells drop to the bottom of a test tube and the rate of settling is a scale of inflammation.?

Re: Naion still progressing after 3 month

#2304

What is ESR?

Show quoted text

On Thu, May 15, 2025, 6:03 PM eyenul via <eyenull=[email protected]> wrote:

They have rule it out since my blood test was normal. Only my ESR is a bit high. But they plan to do eye angiogram next week. Yesterday they diagnosed me with Uveitis as well. They found white dot (cell).

On Fri, 16 May 2025, 08:31 Amy + Adam via , <alf.acs=[email protected]> wrote:
Hello Eyenul,
?
Did your doc rule out temporal arteritis (also called giant cell arteritis)?
?
See: .
?
Good luck,
?
Adam
?
From: [email protected] <[email protected]> On Behalf Of eyenul via
Sent: Thursday, May 15, 2025 12:57 AM
To: [email protected]
Subject: [NAION] Naion still progressing after 3 month
?
Dear all,
?
I am bilateral. Had my first NAION on right eye? Oct 2023. Had my second NAION of left eye early February this year.? It affected my lower side. According to my doctor the swelling on my left eye has stopped about a month ago. Sadly this week I find that my NAION is still progressing. The scotoma has reached my central vision. I am in Ofthal Clinic now. My blood test, BP and? all clear except my ESR which is high -? 68. Is anyone here facing progressing NAION like me? Kindly share.

Re: Naion still progressing after 3 month

#2303

Uveitis can be caused by Herpes Zoster virus (chicken pox, shingles and other diseases). Viruses can cause inflammation. HZ is with you for life after you become infected. HZ can also trigger autoimmune responses in the body. Based on my specific medical history my NO thought HZ could have played a part of my NAION. ?Please understand I’m not offering medical advice as my NO was speculating. ?It might be worth asking your doctor though. ?

Re: Naion still progressing after 3 month

#2302

They have rule it out since my blood test was normal. Only my ESR is a bit high. But they plan to do eye angiogram next week. Yesterday they diagnosed me with Uveitis as well. They found white dot (cell).

Show quoted text

On Fri, 16 May 2025, 08:31 Amy + Adam via , <alf.acs=[email protected]> wrote:

Hello Eyenul,
?
Did your doc rule out temporal arteritis (also called giant cell arteritis)?
?
See: .
?
Good luck,
?
Adam
?
From: [email protected] <[email protected]> On Behalf Of eyenul via
Sent: Thursday, May 15, 2025 12:57 AM
To: [email protected]
Subject: [NAION] Naion still progressing after 3 month
?
Dear all,
?
I am bilateral. Had my first NAION on right eye? Oct 2023. Had my second NAION of left eye early February this year.? It affected my lower side. According to my doctor the swelling on my left eye has stopped about a month ago. Sadly this week I find that my NAION is still progressing. The scotoma has reached my central vision. I am in Ofthal Clinic now. My blood test, BP and? all clear except my ESR which is high -? 68. Is anyone here facing progressing NAION like me? Kindly share.

Wed. May 28 & Sat. June 7, upcoming NAION Peer Support Zoom Meetings

#2301

Info and link are in this email.?

You do not need to let us know which day you prefer or which day you are attending as we are doing both sessions regardless.?

Dear NAION Zoom friends,

The next two NAION Zoom dates are set for both Wed. May 28 and Sat. June 7.? You are welcome to attend one, both or neither.? The Zoom link and various times are listed below. ?Hope to see you!

Wednesday, May 28th

? Hawaii (HST) 12:00 PM (noon)?

? Pacific Daylight Time (PDT) 3:00 PM

? Central Time (CDT): 5:00 PM.

? Eastern Time (EDT): 6:00 PM.

? London, UK (BST): 1100 PM

? Paris (CEST): 12:00 AM -May 29 (next day)

? Cape Town (SAST) 12:00 AM -May 29 (next day)

? Melbourne, Australia (AEST) 8:00 AM -May 29 (next day)

Saturday, June 7th?

? Hawaii, (HST) 5:00 AM

? 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 June 8th (next day)

? Cape Town, South Africa (SAST) 5:00 PM June 8th (next day)

? Melbourne, Australia (AEST)1:00 AM June 8th (next day)

? Aukland, New Zealand (NZST) 3:00 AM June 8th (next day)

ZOOM LINK*

The Zoom link to use is:

If the link isn't working use:

Meeting ID: 627 175 4286

Passcode: 7388161

*Informed 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.??

Thank you,

Debra B?(volunteer)

debrownstein@...?

I am bilateral- 22 months apart;?first eye 2023, second eye 2025.?

Both eyes have small cup-to-disc ratios, I also have mild Sleep Apnea.

My Neuro-Ophlmologist is Dr Joyce Liao at Stanford Byers Eye Institute.

Re: Naion still progressing after 3 month

#2300

开云体育

Hello Eyenul,

?

Did your doc rule out temporal arteritis (also called giant cell arteritis)?

?

See: .

?

Good luck,

?

Adam

?

Show quoted text

From: [email protected] <[email protected]> On Behalf Of eyenul via groups.io
Sent: Thursday, May 15, 2025 12:57 AM
To: [email protected]
Subject: [NAION] Naion still progressing after 3 month

?

Dear all,

?

I am bilateral. Had my first NAION on right eye? Oct 2023. Had my second NAION of left eye early February this year.? It affected my lower side. According to my doctor the swelling on my left eye has stopped about a month ago. Sadly this week I find that my NAION is still progressing. The scotoma has reached my central vision. I am in Ofthal Clinic now. My blood test, BP and? all clear except my ESR which is high -? 68. Is anyone here facing progressing NAION like me? Kindly share.

Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.

#2299

Staurday is June 7. I prefer the Weds. meetings.

Anne

Show quoted text

On Mon, May 12, 2025, 7:20 PM Robert Sobsey via <rsob2002=[email protected]> wrote:

Debra

I think Wednesday would be good. Probably get a lot more people than on a Saturday.

Robert

On Monday, May 12, 2025, 9:03 PM, Debra B via <debrownstein=[email protected]> wrote:
Dear NAION Zoom friends,

I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays.

Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to?please as many as possible.

Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month.

Wednesday proposed May 28th
? Hawaii (HST) 12:00 PM (noon)
? Pacific Daylight Time (PDT) 3:00 PM
? Central Time (CDT): 5:00 PM.
? Eastern Time (EDT): 6:00 PM.
? London, UK (BST): 1100 PM
? Paris (CEST): 12:00 AM next day
? Cape Town (SAST) 12:00 AM next day
? Melbourne, Australia (AEST) 8:00 AM next day

Saturday proposed June 8th
? Hawaii, (HST) 5:00 AM
? 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 June 9th (next day)
? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day)
? Melbourne, Australia (AEST)1:00 AM June 9th (next day)
? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day)

Thank you,
Debra B
debrownstein@...
Bilateral (22 months apart 2023 & 2925).
My optic nerve heads both have small cup-to-disc ratios and
I also h ave mild Sleep Apnea.
My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.

Re: Naion still progressing after 3 month

#2298

After first attack.

Show quoted text

On Thu, 15 May 2025, 20:16 Bestray Pty Ltd via , <bestray=[email protected]> wrote:

Already on CPAP even before the 1st and 2nd NAION attack?

Re: Naion still progressing after 3 month

#2297

Already on CPAP even before the 1st and 2nd NAION attack?

Re: Naion still progressing after 3 month

#2296

Yes but I am on CPAP machine everynight.

Show quoted text

On Thu, 15 May 2025, 15:48 Bestray Pty Ltd via , <bestray=[email protected]> wrote:

Do you have sleep apnea?
Chi

Re: Naion still progressing after 3 month

#2295

Do you have sleep apnea?
Chi

Naion still progressing after 3 month

#2294

Dear all,

?

I am bilateral. Had my first NAION on right eye? Oct 2023. Had my second NAION of left eye early February this year.? It affected my lower side. According to my doctor the swelling on my left eye has stopped about a month ago. Sadly this week I find that my NAION is still progressing. The scotoma has reached my central vision. I am in Ofthal Clinic now. My blood test, BP and? all clear except my ESR which is high -? 68. Is anyone here facing progressing NAION like me? Kindly share.

Wed. May 28 & Sat. June 7, upcoming NAION Peer Support Zoom Meetings

#2293

Dear NAION Zoom friends,

The next two NAION Zoom dates are set for both Wed. May 28 and Sat. June 7.? You are welcome to attend one, both or neither.? The Zoom link and various times are listed below. ?Hope to see you!

Wednesday, May 28th

? Hawaii (HST) 12:00 PM (noon)?

? Pacific Daylight Time (PDT) 3:00 PM

? Central Time (CDT): 5:00 PM.

? Eastern Time (EDT): 6:00 PM.

? London, UK (BST): 1100 PM

? Paris (CEST): 12:00 AM -May 29 (next day)

? Cape Town (SAST) 12:00 AM -May 29 (next day)

? Melbourne, Australia (AEST) 8:00 AM -May 29 (next day)

Saturday, June 7th?

? Hawaii, (HST) 5:00 AM

? 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 June 8th (next day)

? Cape Town, South Africa (SAST) 5:00 PM June 8th (next day)

? Melbourne, Australia (AEST)1:00 AM June 8th (next day)

? Aukland, New Zealand (NZST) 3:00 AM June 8th (next day)

ZOOM LINK*

The Zoom link to use is:

If the link isn't working use:

Meeting ID: 627 175 4286

Passcode: 7388161

*Informed 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.??

Thank you,

Debra B?(volunteer)

debrownstein@...?

I am bilateral- 22 months apart;?first eye 2023, second eye 2025.?

Both eyes have small cup-to-disc ratios, I also have mild Sleep Apnea.

My Neuro-Ophlmologist is Dr Joyce Liao at Stanford Byers Eye Institute.

Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.

#2292

开云体育

May28 is good for me

Show quoted text

On May 13, 2025, at 10:44?PM, Sue Bottema via groups.io <sue.bottema@...> wrote:

?Hi Debra
June 8 would work the best for me…unavailable on the 28th as out on vacation.

Thanks for coordinating all of this!

All the very best for your low vision appointment! ?Look forward to hearing how it went at some point!

Take care!
Sue
(Unilateral in March 2019)
Sue Bottema
Cell 480 719 9919

On May 13, 2025, at 10:35?AM, Danette Janickovic via groups.io <Mommyflyz@...> wrote:

?
The 28th should work for me.?

Thank you!
Danette

On May 12, 2025, at 8:03?PM, Debra B via groups.io <debrownstein@...> wrote:

?
Dear NAION Zoom friends,

I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays.

Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to?please as many as possible.

Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month.

Wednesday proposed May 28th
? Hawaii (HST) 12:00 PM (noon)
? Pacific Daylight Time (PDT) 3:00 PM
? Central Time (CDT): 5:00 PM.
? Eastern Time (EDT): 6:00 PM.
? London, UK (BST): 1100 PM
? Paris (CEST): 12:00 AM next day
? Cape Town (SAST) 12:00 AM next day
? Melbourne, Australia (AEST) 8:00 AM next day

Saturday proposed June 8th
? Hawaii, (HST) 5:00 AM
? 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 June 9th (next day)
? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day)
? Melbourne, Australia (AEST)1:00 AM June 9th (next day)
? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day)

Thank you,
Debra B
debrownstein@...
Bilateral (22 months apart 2023 & 2925).
My optic nerve heads both have small cup-to-disc ratios and
I also have mild Sleep Apnea.
My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.