I suggest you copy and paste this list of chapters into your description. UA-cam will take it and make the timestamps into active links people can jump to, and it will mark and label the chapters on the timeline during playback. (it's possible I missed a title or two near the start, I was scanning through quickly. After the first 13-ish minutes I was more thorough. you can add any I missed.) 00:00 Start 05:28 OUR MISSION TO SECURE AN OFFICIAL ICD CODE FOR VSS FROM THE WORLD HEALTH ORGANIZATION 11:48 VISULA SNOW SYNDROME ICD INCLUSION EFFORTS AND PROGRESS 13:20 ADVOCATES INVOLVED AND SUPPORTING TESTIMONY 14:18 SIERRA’S TESTIMONY ADVOCATING FOR THE INCLUSION OF VISUAL SNOW SYNDROME IN THE ICD 20:50 DECISIONS OF THE PROPOSAL REVIEWERS AND ICD COMMITTEES FROM THE WORLD HEALTH ORGANIZATION 22:15 THE VERDICT 24:15 BENEFITS: PATIENT SAFETY 24:33 BENEFITS: RESEARCH AND CLINICAL TRIALS 24:52 BENEFITS: INSURANCE AND REIMBURSEMENT 25:08 BENEFITS: STANDARDIZED CLASSIFICATION AND CODING OF MEDICAL CONDITIONS 25:34 BENEFITS: IMPROVED DATA ACCURACY AND CLINICAL DOCUMENTATION 26:04 BENEFITS: EPIDEMIOLOGICAL SURVEILLANCE AND RESEARCH 26:32 BENEFITS: GLOBAL HEALTH STATISTICS 26:50 BENEFITS: HEALTH INFORMATION SYSTEMS 27:08 BENEFITS: CLINICAL DECISION SUPPORT 27:28 BENEFITS: PUBLIC HEALTH POLICY AND PLANNING 27:74 BENEFITS: ADVANCEMENTS IN MEDICAL SCIENCE 28:07 VICTORY 29:18 INSIGHTS FROM THE VSI TEAM AND RESEARCHERS 29:40 DR. & PROFESSOR PETER GOADSBY, NEUROLOGIST, UCLA, KINGS COLLEGE, VSI GLOBAL RESEARCH TEAM, BRAIN PRIZE WINNER 30:23 DR. & PROFESSOR OWEN WHITE, MONASH UNIVERSITY, DEPT. OF NEUROSCIENCE NEUROLOGY, NEURO-OPTHAMOLOGY, & RESEARCH 32:03 DR. CHRISTOFF SHANKIN, NEUROLOGIST 32:45 ANTONIA KLEIN NEUROLOGY RESIDENT 33:19 ADDITIONAl COMMENTARY DR. & PROFESSOR PETER GOADSBY, DR. & PROFESSOR OWEN WHITE AND ANTONIA KLEIN NEUROLOGY RESIDENT 36:54 VANESSA MORA, DIRECTOR OF RESEARCH, VISUAL SNOW INITIATIVE (VSI) 38:46 MEHRAD MAZAHERI, DIRECTOR OF IT, VISUAL SNOW INITIATIVE 39:38 DR. CHARLES SHIDLOFSKY, NEURODEVELOPMENTAL OPTOMITRIST, OD, FOVDR, FNAP, NORA PRESIDENT, ISVA PAST-PRESIDENT 40:16 DR. TERRY TSANG, NEURODEVELOPMENTAL OPTOMITRIST, VISION THERAPIST, FAAO, FCOVD 41:03 DR. LEANNA DUDLEY, OD, FCOVD 42:10 DR. & PROFESSOR PETER GOADSBY 43:26 DR. & PROFESSOR OWEN WHITE 44:25 CHANGING THE FUTURE / THANK YOU
Thank you! I knew I had VSS since I was little, back in the early 90’s. I finally said something about it realizing that it wasn’t normal and told it was just floaters. My VSS is so debilitating I can’t drive, I struggle with work and day to day life.
I had since I was in Elementary school and I am now 53 years old. Little did I know that this is a neurological disorder. It has definitely been a battle!
My doctors are still puzzled and have no clue what VSS is. I found out that I had this VSS condition back in my early childhood. I failed an eye exam in elementary school back in 1977-78. During my exam,the nurse covered my left eye and I could see perfectly fine out of my right eye. But when she proceeded covered my right eye, my world turned upside down as I could not see clearly out of my left eye but only static! The nurse asked me if I was okay but I shook my head and said, “Nurse, my left eye is blurry and I can’t see clearly!” 😢 Well, I am now 53 years old now and have been trying to adapt with this neurological condition and it has been rough for sure. I didn’t even know what VSS was until about 7 years ago. Keep fighting the good fight and God bless 🙏🏼!
Really interesting that you mentioned that blackout like onset. I remember a similar kind of sudden darkness when VSS started for me when I was about 10 or so and then the static in the field of vision began. Very curious as to whether every individual with VSS has such a sharp onset and what on earth mechanistically is going on with that sudden semi-blackout! Amazing work getting more official recognition for VSS; I thought this wouldn't happen in my lifetime
I've accepted my condition and that I will live with it. But if the future generations have some hope to find a cure, that would be amazing!
I cannot thank you all enough!
This made me cry. Finally some help in this world
Thanks for all of your effort Sierra!
Thank you so much for all that you are achieving for the VS community 🙏
This might look like a small thing, but it's HUGE! Thank you, Sierra, for all the hard work ❤
This is very important! Big Big Thank you for the invested work! I believe that everything is going well, everything will be fine for all of us!
Finally, thank you so much. We wish you the best for advocating on our behalf.
YES! Thank you very much for your work 🙏
Amazing news 🎉. Congratulations to VSI
Thank you, Sierra. Greetings from 🇧🇷
Amazing news! Thank you all for your hard work and advocacy.
Thank you so much! Greetings from Germany
I cried! Thank you so much!!!! God bless you✝️🙌
Congratulations 🎉 the cure is near keep your hopes ❤thank you sierra and all the team❤
I suggest you copy and paste this list of chapters into your description. UA-cam will take it and make the timestamps into active links people can jump to, and it will mark and label the chapters on the timeline during playback. (it's possible I missed a title or two near the start, I was scanning through quickly. After the first 13-ish minutes I was more thorough. you can add any I missed.)
00:00 Start
05:28 OUR MISSION TO SECURE AN OFFICIAL ICD CODE FOR VSS FROM THE WORLD HEALTH ORGANIZATION
11:48 VISULA SNOW SYNDROME ICD INCLUSION EFFORTS AND PROGRESS
13:20 ADVOCATES INVOLVED AND SUPPORTING TESTIMONY
14:18 SIERRA’S TESTIMONY ADVOCATING FOR THE INCLUSION OF VISUAL SNOW SYNDROME IN THE ICD
20:50 DECISIONS OF THE PROPOSAL REVIEWERS AND ICD COMMITTEES FROM THE WORLD HEALTH ORGANIZATION
22:15 THE VERDICT
24:15 BENEFITS: PATIENT SAFETY
24:33 BENEFITS: RESEARCH AND CLINICAL TRIALS
24:52 BENEFITS: INSURANCE AND REIMBURSEMENT
25:08 BENEFITS: STANDARDIZED CLASSIFICATION AND CODING OF MEDICAL CONDITIONS
25:34 BENEFITS: IMPROVED DATA ACCURACY AND CLINICAL DOCUMENTATION
26:04 BENEFITS: EPIDEMIOLOGICAL SURVEILLANCE AND RESEARCH
26:32 BENEFITS: GLOBAL HEALTH STATISTICS
26:50 BENEFITS: HEALTH INFORMATION SYSTEMS
27:08 BENEFITS: CLINICAL DECISION SUPPORT
27:28 BENEFITS: PUBLIC HEALTH POLICY AND PLANNING
27:74 BENEFITS: ADVANCEMENTS IN MEDICAL SCIENCE
28:07 VICTORY
29:18 INSIGHTS FROM THE VSI TEAM AND RESEARCHERS
29:40 DR. & PROFESSOR PETER GOADSBY, NEUROLOGIST, UCLA, KINGS COLLEGE, VSI GLOBAL RESEARCH TEAM, BRAIN PRIZE WINNER
30:23 DR. & PROFESSOR OWEN WHITE, MONASH UNIVERSITY, DEPT. OF NEUROSCIENCE NEUROLOGY, NEURO-OPTHAMOLOGY, & RESEARCH
32:03 DR. CHRISTOFF SHANKIN, NEUROLOGIST
32:45 ANTONIA KLEIN NEUROLOGY RESIDENT
33:19 ADDITIONAl COMMENTARY DR. & PROFESSOR PETER GOADSBY, DR. & PROFESSOR OWEN WHITE AND ANTONIA KLEIN NEUROLOGY RESIDENT
36:54 VANESSA MORA, DIRECTOR OF RESEARCH, VISUAL SNOW INITIATIVE (VSI)
38:46 MEHRAD MAZAHERI, DIRECTOR OF IT, VISUAL SNOW INITIATIVE
39:38 DR. CHARLES SHIDLOFSKY, NEURODEVELOPMENTAL OPTOMITRIST, OD, FOVDR, FNAP, NORA PRESIDENT, ISVA PAST-PRESIDENT
40:16 DR. TERRY TSANG, NEURODEVELOPMENTAL OPTOMITRIST, VISION THERAPIST, FAAO, FCOVD
41:03 DR. LEANNA DUDLEY, OD, FCOVD
42:10 DR. & PROFESSOR PETER GOADSBY
43:26 DR. & PROFESSOR OWEN WHITE
44:25 CHANGING THE FUTURE / THANK YOU
congrads! ❤❤❤ Thank you so so much.
الحمد لله soon cure will be in our hands
Big step forward! Thank you deeply for amazing work you all have done ❤
Thank you! I knew I had VSS since I was little, back in the early 90’s. I finally said something about it realizing that it wasn’t normal and told it was just floaters.
My VSS is so debilitating I can’t drive, I struggle with work and day to day life.
I had since I was in Elementary school and I am now 53 years old. Little did I know that this is a neurological disorder. It has definitely been a battle!
Well done team this is terrific news. Thanks for all your hard work!
This gave me tears. Thank you so much.
Good work, gives people hope
My doctors are still puzzled and have no clue what VSS is. I found out that I had this VSS condition back in my early childhood. I failed an eye exam in elementary school back in 1977-78.
During my exam,the nurse covered my left eye and I could see perfectly fine out of my right eye. But when she proceeded covered my right eye, my world turned upside down as I could not see clearly out of my left eye but only static! The nurse asked me if I was okay but I shook my head and said, “Nurse, my left eye is blurry and I can’t see clearly!” 😢 Well, I am now 53 years old now and have been trying to adapt with this neurological condition and it has been rough for sure. I didn’t even know what VSS was until about 7 years ago. Keep fighting the good fight and God bless 🙏🏼!
Thank you❤
🤍god bless you. Thank you
Good work!
Fantastic!!!!!
Hope🙏🏻
Amazing! Thanks so much
We are so young with so many dreams …. U r the only hope 😢 ❤ 🇮🇳🇮🇳
Really interesting that you mentioned that blackout like onset. I remember a similar kind of sudden darkness when VSS started for me when I was about 10 or so and then the static in the field of vision began. Very curious as to whether every individual with VSS has such a sharp onset and what on earth mechanistically is going on with that sudden semi-blackout! Amazing work getting more official recognition for VSS; I thought this wouldn't happen in my lifetime
some expierience a slow progressive onset (myself)
Woah woah woah
You perfectly had me until you mentioned the W.H.O.
Now I’m sceptical
y?
My doctor still refuses to accept this is a thing. I have had it for 4 years now
🎉🎉🎉
Weird how i got VSS after the covid vaccine
W
What its mean?????
Google it!
@@EnjoyTheSilence_1google what???
@@EnjoyTheSilence_1if u know tell me