Donate to Illuminate Order Brochures Contact TSF
Facebook Logo Twitter Logo Youtube Logo Instagram Logo LinkedIn Logo TikTok Logo Blue Sky Logo
Click here to submit your story
Tell Your Story

Choose Your Language:

Voices of TSF

Launched in 2014, Voices of TSF – our testimonial library – was the organization’s first program and remains our longest-running awareness initiative. Explore powerful and inspiring stories from patients, caregivers and clinicians around the world – available in 27 languages. Sharing is caring – if you’d like to have your story featured, email [email protected].

Role

Disease

Adam’s NMO Story – Narrated by The Love of His Life
Adam’s NMO Story – Narrated by The Love of His Life
My name is Jamie and I am Adam’s partner of 17 years. This is Adam’s NMO story from my perspective……
Addie’s TM Story – Blessed to Call Her Mine
Addie’s TM Story – Blessed to Call Her Mine
Addison “Addie” Havens was a healthy two year-old little girl full of energy and spunk who loved to play with…
Adelaide & Joe’s NMO Story – A Husband & Wife Perspective
Adelaide & Joe’s NMO Story – A Husband & Wife Perspective
ADELAIDE Her mother, dying on the bed next to her, asked Adelaide for a sip of water.  As Adelaide moved…
Adria’s NMO Story – Juggling Law & Autoimmune Diseases Like a Pro
Adria’s NMO Story – Juggling Law & Autoimmune Diseases Like a Pro
Since she already had been diagnosed with lupus, Raynaud syndrome, and Sjogren’s syndrome, Adria didn’t think much about the tingling…
Alanna’s AE Story – Patient Presents with Research Agenda
Alanna’s AE Story – Patient Presents with Research Agenda
In 2023, I was preparing to go to Washington, DC for Rare Disease Week as a Young Adult Rare Representative…
Allison’s NMO Story – Keep on Keepin’ On
Allison’s NMO Story – Keep on Keepin’ On
My name is Allison and I am a married, busy mom of three children (17, 12 & 12 years old).…
Alyson’s NMO Story | All That Glitters Isn’t Gold
Alyson’s NMO Story | All That Glitters Isn’t Gold
It began like a pain unlike any other. In 2009, and during my sophomore year of college, I was sitting…
Alyson’s Story – Silver Lining’s Playbook to NMO
Alyson’s Story – Silver Lining’s Playbook to NMO
With a vulnerable yet advocational heart, I would love to re-introduce myself to the NMO community! My name is Alyson…
Alyssa’s NMO Story – Still I Rise
Alyssa’s NMO Story – Still I Rise
2018 started out great. I was a senior in high school, applying to universities and getting excited about high school…
Amanda’s NMO Story – Physical Strength Gets You to the Start Line; Mental Strength Gets You to the Finish
Amanda’s NMO Story – Physical Strength Gets You to the Start Line; Mental Strength Gets You to the Finish
Back in 2013 and 2014, I completed two 100km walks to raise money for Oxfam – something I am so…
Andrea & James’ MOG Story – Love Conquers MOG
Andrea & James’ MOG Story – Love Conquers MOG
Published May 1, 2019
Angela’s NMO Story – From Managing Retail to Managing Vision Loss & Paralysis
Angela’s NMO Story – From Managing Retail to Managing Vision Loss & Paralysis
I was diagnosed with NMO on March 10, 2015… An MRI that was done while I was receiving inpatient care…
Ann’s NMO Story – Not Letting NMO Stop Her
Ann’s NMO Story – Not Letting NMO Stop Her
Ann and her husband were at the seaside, collecting seaweed to use in a kitchen garden they were digging.  Ann…
AnneMarie’s NMO Story – Proof of my Strength
AnneMarie’s NMO Story – Proof of my Strength
My name is AnneMarie and my journey with NMO began in 2002 when I was just 16 years old… One…
AnneMarie’s NMOSD Update – My Stronger Path Forward
AnneMarie’s NMOSD Update – My Stronger Path Forward
Much has changed in my world since my initial story had been published on TSF’s website in 2020. (scroll below…
Anthy’s MOG Story – Advocating for Answers
Anthy’s MOG Story – Advocating for Answers
It was the Friday before Halloween in 2018. Anthy was on her way home from work when she called her…
Arif’s Story – Becoming Stronger with TM
Arif’s Story – Becoming Stronger with TM
My name is Arif and I am from Jhansi, a historic city located in the northern part of India. This…
Arlena’s NMO Story – Still Breathing
Arlena’s NMO Story – Still Breathing
I was a 26 year old working in the Pentagon in the Navy Executive Dining Facility. I was Active Duty…
Ashlee’s NMO Story – A Fighter for her Family
Ashlee’s NMO Story – A Fighter for her Family
My name is Ashlee. Thank you for taking the time to read my story. I’m not really sure where to…
Avery’s MOG Story – Racing Against MOG
Avery’s MOG Story – Racing Against MOG
My entire life, I was always a healthy and energetic person… I have played tons of sports and never went…
Bella’s NMO Story – In This Family, We Fight Together
Bella’s NMO Story – In This Family, We Fight Together
August 29, 2017 will forever be embedded in my mind because it was the day my 9 year old daughter,…
Betty’s NMO Story – The NMO Monster
Betty’s NMO Story – The NMO Monster
In October 2015, as I was traveling to Oklahoma to visit my sister, I developed a deep gray-teardrop-shaped spot in…
Brian’s MOG Story – Life Goes On
Brian’s MOG Story – Life Goes On
Life was good in the spring of 2015; no, it was great! In 2012 I completed my master’s degree, which…
Brittany’s NMO Story – An Unsung Heroine
Brittany’s NMO Story – An Unsung Heroine
One morning in October of 2013, I remember feeling a sharp pain in my right eye when I would try…
Brittney’s MOG-AD Story – #JaidynStrong
Brittney’s MOG-AD Story – #JaidynStrong
My beautiful 4-year-old (5 years old now) daughter Jaidyn woke up one morning in late April 2021 with a headache,…
Caryn’s NMO Story – Building A United Front
Caryn’s NMO Story – Building A United Front
My NMO journey began in 2018. It was Martin Luther King Day. I was visiting my parents for the weekend.…
Catherine’s NMO Story – Life Is My Marathon
Catherine’s NMO Story – Life Is My Marathon
Life before NMO – I was an active mom, worked as a home health nurse case manager and an avid…
Chasity’s Story – It Started with a Headache
Chasity’s Story – It Started with a Headache
It started with a never-ending headache… Click the image below to watch Chasity’s video in which she describes her experience…
Chelsey’s NMO Story – Sister & Scientist
Chelsey’s NMO Story – Sister & Scientist
Chelsey Judge, PhD, is a scientist with a particular interest in immunology. She also happen to be the sister of…
Chelsey’s NMO Story – Vision Without Sight
Chelsey’s NMO Story – Vision Without Sight
In February 2019, I received an NMOSD diagnosis after nearly 11 years of being treated for multiple sclerosis… I think…
Christy’s NMO Story – Being Heard Makes All the Difference
Christy’s NMO Story – Being Heard Makes All the Difference
My name is Christy and I’ve been fighting this disease without knowing what I was up against since before 2008……
Christy’s NMO Story – Conquering Every Day with NMO
Christy’s NMO Story – Conquering Every Day with NMO
My NMO story started about 15 years ago. I was a sophomore in high school and was just released for…
Clarinda’s NMO Story – My “Coming Out”
Clarinda’s NMO Story – My “Coming Out”
It all started with an itch at the back of my neck that continued for about three weeks without any…
Daniele’s NMO Story – MENINA CORAGEM (Courageous Girl)
Daniele’s NMO Story – MENINA CORAGEM (Courageous Girl)
I was diagnosed with Neuromyelitis Optica in June of 2012 after two hospitalizations totaling 5 months, during which I lost…
Danielle’s NMO Story – Sending Spoons
Danielle’s NMO Story – Sending Spoons
April Fools’ Day jokes are supposed to be funny. However, the one my parents thought I was playing two years…
Daniëlle’s NMO Story – Watch This Space
Daniëlle’s NMO Story – Watch This Space
On the evening of Sunday, 17th January 2010, my mother was putting up a fight with my brothers and I…
David’s MOG Story – Father of a Survivor
David’s MOG Story – Father of a Survivor
When your daughter suddenly goes blind in one eyes, you feel helpless. When the doctors don’t know what it is…
Dazmine’s NMO Story – A Single Mother Living with NMO
Dazmine’s NMO Story – A Single Mother Living with NMO
In August 2019, while at work, I began to notice a change in my right eye. I thought it was…
Deanna’s NMO Story – Choosing Resilience
Deanna’s NMO Story – Choosing Resilience
February 1st, 2011 – I began having vision problems in my left eye and a few days later, it got…
Deb’s NMO Story – Doctor, Do You Love Me?
Deb’s NMO Story – Doctor, Do You Love Me?
The bad news is that apparently I’m about to die. The good news is that both my fantasy doctor boyfriend…
Dionne’s NMO Story – Journey to a Diagnosis
Dionne’s NMO Story – Journey to a Diagnosis
Meet Dionne, a vibrant 46-year old, former nurse, mother of 2 from New Orleans, Louisiana who has been living with…
Dominic’s NMO Story – Guided Through the NMO Storm
Dominic’s NMO Story – Guided Through the NMO Storm
On December 25, 2018, we finally received answers and a diagnosis after Dominic became ill on November 19th with what…
Donna’s NMO Story – You Are Only Dealt What You Can Handle
Donna’s NMO Story – You Are Only Dealt What You Can Handle
It was March 2009. I was 39 years old. One morning, I woke up feeling significant pressure behind my left…
Dr. Farrah Mateen’s Story – A Global Perspective on NMO
Dr. Farrah Mateen’s Story – A Global Perspective on NMO
Like many physician-researchers in my field, I spend a lot of time thinking about NMO, both inside and outside of…
Dr. Michael Levy’s NMO Story – A Physician’s Quest to Find a Cure
Dr. Michael Levy’s NMO Story – A Physician’s Quest to Find a Cure
I was an on-call intern late one night at the Johns Hopkins Hospital when I met a young woman who…
Dr. Ola Marzouk’s Story – From Cairo to Verona: A Neuroimmunological Journey
Dr. Ola Marzouk’s Story – From Cairo to Verona: A Neuroimmunological Journey
The Beginning of the Dream: Why I Chose Neuroimmunology During my daily work as a clinical pathologist specializing in immunology…
Dr. Sara Mariotto’s Story – Bedside to Bench
Dr. Sara Mariotto’s Story – Bedside to Bench
I was a young resident at the University of Verona’s, Neurology Unit when I met a woman with rapidly evolving…
Dr. Tracey Cho’s NMO Story – Teaching Future Neurologists That NMOSD is a “Do Not Miss” Diagnosis
Dr. Tracey Cho’s NMO Story – Teaching Future Neurologists That NMOSD is a “Do Not Miss” Diagnosis
My name is Tracey Cho. I am a neurologist and a teacher. I specialize in autoimmune and infectious neurology, treating…
Dr. Weinshenker’s Story – Witnessing the Transformation of Neuromyelitis Optica
Dr. Weinshenker’s Story – Witnessing the Transformation of Neuromyelitis Optica
My name is Brian Weinshenker and I am a neurologist at the Mayo Clinic in Rochester, MN.  I established a…
Eleanor’s NMO Story – A Lucky Beach Girl
Eleanor’s NMO Story – A Lucky Beach Girl
Is it unreasonable to call a woman who comes down with a rare autoimmune disease lucky? What about two autoimmune…
Eliana’s NMO Story – My Blissful Tragedy
Eliana’s NMO Story – My Blissful Tragedy
December of 2020 started perfectly. I recently accepted my first job offer after completing my undergraduate degree and anticipated my…
Elizabeth’s NMO Story – Mind over Matter
Elizabeth’s NMO Story – Mind over Matter
My life changed eleven years ago when I was diagnosed with NMO. To this day, I still have moments where…
Evannie’s NMO Story – You Never Know
Evannie’s NMO Story – You Never Know
You never know what someone’s going through. I have always been told this and I believe it. Still, I never…
Fred’s NMO Story – Retirement… Not What I Thought It Would Be!
Fred’s NMO Story – Retirement… Not What I Thought It Would Be!
Nobody told me that retirement was going to be so challenging! I was ready to start enjoying the fruits of…
Gerome’s NMO Story – Whatever It Takes
Gerome’s NMO Story – Whatever It Takes
Three years ago, right in the middle of my medical internship, I was diagnosed with Seronegative NMOSD. I took a…
Greg’s NMO Story – Making the Choice to Thrive
Greg’s NMO Story – Making the Choice to Thrive
According to all of his medical tests, Greg is negative for both multiple sclerosis (MS) and neuromyelitis optica (NMO).  Like…
Hali’s NMO Story – No Disease Will Ever Wear Me Down
Hali’s NMO Story – No Disease Will Ever Wear Me Down
My name is Hali and I am a 19 year old Scottish Law student living with NMOSD. — It all…
Hannah’s MOGAD Story – Braving the Unknown: Healing Through Research
Hannah’s MOGAD Story – Braving the Unknown: Healing Through Research
Back in July 2022, I was fully immersed in motherhood with my two daughters approaching toddlerhood, finally feeling like I…
Heather’s NMO Story – Always Fighting
Heather’s NMO Story – Always Fighting
I was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) in November 2013. My symptoms started June of that year with…
Heather’s NMO Story – Determined to Overcome
Heather’s NMO Story – Determined to Overcome
Something Wasn’t Right I was the perfect example of the shiny student off to bigger and better things from the…
Het verhaal van Els – Leven met een zeldzame ziekte, NMOSD
Het verhaal van Els – Leven met een zeldzame ziekte, NMOSD
Els is ambassadeur voor de Sumaira Foundation, die opkomt voor de belangen van mensen met NMOSD en MOGAD. Zelf kreeg…
Historia MOG Bożena – Życie 3.0
Historia MOG Bożena – Życie 3.0
Drogi Czytelniku – chciałabym podzielić się z Tobą naszą bardzo osobistą historią, która zmieniła życie moje i mojego męża.  Bardzo…
Ilene’s NMO Story – Lessons Learned; Resilience Cultivated
Ilene’s NMO Story – Lessons Learned; Resilience Cultivated
I’m Ilene, the youngest of seven children.  I come from a family of school teachers and musicians. I love board…
Iliana’s NMO Story – My NMO Diagnosis in Canada
Iliana’s NMO Story – My NMO Diagnosis in Canada
Part I and II of this story were originally published in 2015 by NMO Stories, presented by The Guthy-Jackson Foundation…
Ilona’s NMOSD Story – My New Normal, Stronger Than You Know
Ilona’s NMOSD Story – My New Normal, Stronger Than You Know
Until my early 30’s I was an active young woman, healthy, exercised regularly, independent, worked full time and loved to…
Ireland’s NMO Story – A Voice for the Unsung
Ireland’s NMO Story – A Voice for the Unsung
At age eight, when I first started chemotherapy for my autoimmune disease, the neurologist told my parents the maximum amount…
Isabella’s Story – A New Baby, a New Diagnosis, a New Life
Isabella’s Story – A New Baby, a New Diagnosis, a New Life
While I was pregnant, I began having blurred vision. I went to see ophthalmologists, opticians, and general practitioners, but they…
Isadora’s MOG Story – Dim Journey to Enlightenment
Isadora’s MOG Story – Dim Journey to Enlightenment
It was December 27, 2022, two days after a quiet but emotionally stressful Christmas in India when I noticed a…
Izabela’s NMO Story – A Lust For Life
Izabela’s NMO Story – A Lust For Life
May 15, 2021 – a date I’ll never forget, but I didn’t know then that it would change my life…
Jacqueline’s NMO Story – Scaling That Mountain
Jacqueline’s NMO Story – Scaling That Mountain
In February 2020, I started having weakness, numbness, burning, and pain on both sides of my body, starting with my…
Jaime’s NMO Story – Finding My Happy Place
Jaime’s NMO Story – Finding My Happy Place
My name is Jaime. I live in the small town of Exeter, Pennsylvania. I am a wife and a mother…
James’ NMO Story – Bumpy Road to a Diagnosis
James’ NMO Story – Bumpy Road to a Diagnosis
Hello, my name is James. I am 24 years old. I am a recent college graduate, a skateboarder, a geek,…
Jamie’s NMO Story – Holding on, even if a little too tight…
Jamie’s NMO Story – Holding on, even if a little too tight…
Jamie was diagnosed with Non-Hodgkins Lymphoma at the age of 35.  Her condition was such that she didn’t need treatment,…
Jarrie’s NMO Story – In Loving Memory of Donna
Jarrie’s NMO Story – In Loving Memory of Donna
Jarrie grew up on a farm and declares himself a simple man. I think otherwise. I think Jarrie is a…
Jason’s NMO Story – Advocacy and Awareness Saves Lives
Jason’s NMO Story – Advocacy and Awareness Saves Lives
Modern medicine in the United States was a complete failure. For six weeks, the hospitals, doctors, and many lab tests…
Jean’s NMO Story – A Modern Medical Miracle
Jean’s NMO Story – A Modern Medical Miracle
Sunday 15 December 2013, on a friend’s farm in the beautiful little town of Dullstroom in Mpumalanga South Africa, started…
Jeanette’s NMO Story – Surviving Since Birth
Jeanette’s NMO Story – Surviving Since Birth
My name is Jeanette McCourt from Arizona and I was diagnosed with Neuromyelitis Optica on June 1, 2016. This diagnosis…
Joanna’s NMO Story – The Differential Diagnosis
Joanna’s NMO Story – The Differential Diagnosis
The differential diagnosis: It is a skill we learn early in medical school and it is designed to guide the…
Joyce’s NMO Story – I Am An NMO Warrior
Joyce’s NMO Story – I Am An NMO Warrior
Hello! My name is Joyce and I am from Pittsburgh, Pennsylvania. My NMO symptoms started with loss of bladder control,…
Julia’s MOG Story – Early Signs of a Rare Disease
Julia’s MOG Story – Early Signs of a Rare Disease
Now that I have been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody-Associated disease, or MOG-Ab disease, I have met others who…
Julias NMOSD-Geschichte – Neues Leben, selbe Träume
Julias NMOSD-Geschichte – Neues Leben, selbe Träume
Anfang 2021 fing alles mit einer starken Coronainfektion an, von der ich mich das ganze darauffolgende halbe Jahr nicht mehr…
Julie’s NMO Story – Tingles & Tinkles
Julie’s NMO Story – Tingles & Tinkles
Five years ago, my oldest daughter and I were grocery shopping when it occurred to me that the grocery store…
Julie’s NMO Story – Transforming Curses Into Blessings
Julie’s NMO Story – Transforming Curses Into Blessings
Julie has had NMO for at least a dozen years.   From before and since that time, she has been…
Kailee’s Story – My NMO Diagnosis
Kailee’s Story – My NMO Diagnosis
My name is Kailee. I am a mom, wife, daughter, teacher, dance instructor, and I have neuromyelitis optica spectrum disorder…
Katy’s NMO Story – The Making of a Warrior
Katy’s NMO Story – The Making of a Warrior
This is a story of how a warrior is made. I have been gifted with the job of being this…
Kayla’s NMO Story – Don’t Just Turn It On, Turn It Up
Kayla’s NMO Story – Don’t Just Turn It On, Turn It Up
It all began in early 2020 when Kayla noticed a tingling sensation in her right leg. She didn’t think too…
Kellin’s NMO Story – One Step at a Time; The Journey Starts Here
Kellin’s NMO Story – One Step at a Time; The Journey Starts Here
My name is Kellin. I am a 28-year-old South African NMO patient and this is my story… Late in 2015,…
Kelly Ann’s NMO Story – Saving My Own Life
Kelly Ann’s NMO Story – Saving My Own Life
Meet the happy workaholic, Kelly Ann, an ambitious business + LinkedIn coach, podcaster and luxury brand consultant from California who…
Keri’s NMO Story – New Baby & New Diagnosis
Keri’s NMO Story – New Baby & New Diagnosis
I have never been a person that likes to sit still; I don’t even like going to the movies.  If…
Kia’s NMO Story – Deciphering my Diagnosis
Kia’s NMO Story – Deciphering my Diagnosis
The Diagnosis My NMO journey started after my 29th birthday in January 2016. I had a headache that would not…
Kristen’s NMO Story – Changed for the Better
Kristen’s NMO Story – Changed for the Better
I am no stranger to rare diseases. At 17, I was diagnosed with Toxoplasmosis. At 22, Phyllodes tumors. Chiari Malformation…
L’histoire de Natasha – NMOSD, Ma Force
L’histoire de Natasha – NMOSD, Ma Force
Bonjour, je m’appelle Natasha, j’ai 46 ans, et voici comment la NMOSD (neuromyélite optique) est entrée dans ma vie. Tout…
L’histoire de Nelly –  Une vie colorée parce que la vie est belle
L’histoire de Nelly –  Une vie colorée parce que la vie est belle
Je m’appelle Nelly, j’ai 44 ans et je vis dans un joli village dans l’Oise et j’ai la MOGAD.  Sans…
L’histoire de Rokhaya – Au-delà du Diagnostic : Un Parcours Résilient et un Combat Quotidien face à la NMO
L’histoire de Rokhaya – Au-delà du Diagnostic : Un Parcours Résilient et un Combat Quotidien face à la NMO
Je m’appelle Rokhaya Gningue, maman d’un beau jeune homme de 18 ans.  Originaire du Sénégal, je réside actuellement au Québec.…
L’histoire NMO d’Elodie – Ma NMO, Mon Histoire
L’histoire NMO d’Elodie – Ma NMO, Mon Histoire
Bonjour à tous, je m’appelle Elodie. J’ai prochainement 37 ans. J’habite à Orp-Jauche, Brabant wallon, Belgique. En 2008, j’ai fait…
L’histoire NMO de Bérengère – Dans l’errance
L’histoire NMO de Bérengère – Dans l’errance
Je m’appelle Bérengère, j’ai une maladie rare appelée NMOSD. 2001: J’ai 21 ans, bientôt 22, et tout va bien dans…
L’histoire NMO de Marie-Claude – Une Cohabitation avec une Maladie Rare
L’histoire NMO de Marie-Claude – Une Cohabitation avec une Maladie Rare
Le 6 octobre 2014, le jour où ma vie a pris une nouvelle voie pour poursuivre son chemin. Le jour…
L’histoire NMO de Fatiha – Renaissance après NMO
L’histoire NMO de Fatiha – Renaissance après NMO
Bonjour à tous, je m’appelle Fatiha. J’habite à Étalleville en Normandie. Je suis tombée malade le 20 février 2016. Date…
La Historia de Anayansi – El reto de vivir con múltiples enfermedades huérfanas
La Historia de Anayansi – El reto de vivir con múltiples enfermedades huérfanas
Hola mi nombre es Anayansi, soy de Panamá y esta es, Mi historia, contada desde mi experiencia. Mi historia de…
La historia de Johanna – La NMO me hizo despertar
La historia de Johanna – La NMO me hizo despertar
Nací en Armenia, una ciudad muy pequeña en Colombia. A los 16 años me fuí a Bogotá, la capital, a…
La historia de MOGAD de Ernesto – Un diagnóstico no es un dictamen
La historia de MOGAD de Ernesto – Un diagnóstico no es un dictamen
Desde los 13 años he practicado deporte de alto rendimiento, pasando por el futbol soccer profesional, correr medias distancias y…
La historia de NMO de Lizzy – Todos tenemos una misión en la vida
La historia de NMO de Lizzy – Todos tenemos una misión en la vida
Hola ¿Tienes 2 minutos? Déjame contarte parte de mi historia. Esta comienza con el recuerdo de mi abuelo, él solía…
La historia de NMOSD de Mai – Más Allá de Mis Límites
La historia de NMOSD de Mai – Más Allá de Mis Límites
¿Alguna vez has tenido uno de esos sueños en los que, por más que corres, no avanzas? Bueno, pues así…
La historia de NMOSD de Mily – De los peores días de mi vida a querer ayudar
La historia de NMOSD de Mily – De los peores días de mi vida a querer ayudar
Hola, soy Gabriela Milagros, me suelen decir “Mily” Cuando fui muy pequeña lamentablemente viví en un entorno no muy agradable,…
La historia de Olga – EL DÍA QUE MI VIDA SE PARTIÓ EN DOS
La historia de Olga – EL DÍA QUE MI VIDA SE PARTIÓ EN DOS
Me llamo Olga Doncel, tengo 40 años y en este pequeño escrito voy a contar la historia de cómo, sin…
La historia del NMOSD de Andrea – Una enfermedad en medio del Gaslighting
La historia del NMOSD de Andrea – Una enfermedad en medio del Gaslighting
Mi nombre es Andrea, tengo 28 años y vivo con más de un huésped incómodo en mi cuerpo. Comencemos por…
La storia del MOG di Viviana – Sono il suo scudo
La storia del MOG di Viviana – Sono il suo scudo
Ciao a tutti, mi presento, sono la mamma di Auri. Mi piace presentarmi così, perché questa è la sua storia,…
La storia del MOGAD di Clara – Un passo alla volta: la mia lotta contro il MOGAD
La storia del MOGAD di Clara – Un passo alla volta: la mia lotta contro il MOGAD
Era maggio 2023 e mi stavo avvicinando sempre di più alla sessione estiva degli esami. Avevo molti progetti da consegnare,…
La storia del MOGAD di Nour – Dalla luce all’oscurità è solo l’inizio della nuova illuminazione
La storia del MOGAD di Nour – Dalla luce all’oscurità è solo l’inizio della nuova illuminazione
Mi chiamo Nour. Era il primo gennaio del 2023 quando la mattina del primo giorno dell’anno mi sono svegliata con…
La storia di Tito, il punto di vista di una madre
La storia di Tito, il punto di vista di una madre
Questa è la prima volta che racconto pubblicamente la nostra storia. Finora è rimasta in poche parole sussurrate. Ma oggi,…
Laura’s MOG-AD Story – It’s Made Me Who I Am Today
Laura’s MOG-AD Story – It’s Made Me Who I Am Today
It all began with a tremor. It was September 2018, and I was off on maternity leave after having my…
Leah’s NMO Story – Resilience Through Life’s Interruptions
Leah’s NMO Story – Resilience Through Life’s Interruptions
Before I begin, I would like to thank you and tell you how much I appreciate you taking the time…
Leda’s NMO Story – I Want to Live While I Live!
Leda’s NMO Story – I Want to Live While I Live!
A native Portuguese speaker and resident of Denmark, Leda wrote her story in English, Portuguese, and Danish. Please scroll down…
Lelainia’s NMO Story – 30 Years with the Wrong Treatment
Lelainia’s NMO Story – 30 Years with the Wrong Treatment
I can trace my first NMO symptoms back to when I was just 12 years old… I’d be walking down…
Letitia’s NMO Story – Strength Gained from the Madness Survived
Letitia’s NMO Story – Strength Gained from the Madness Survived
My name is Letitia and I am a 22-year-old South African NMO patient. My story began on the 26th of…
Lety’s Story – It’s My Life; Not NMOSD’s
Lety’s Story – It’s My Life; Not NMOSD’s
It all began in June 2020, the peak of when COVID-19 had finally hit Texas… Allow me to backtrack before…
Lexi’s NMO Story – Shaping My Identity
Lexi’s NMO Story – Shaping My Identity
Freshman year of college is a time to form your sense of identity, but when I started school, I thought…
Lillian’s NMO Story – Living For Her Family
Lillian’s NMO Story – Living For Her Family
She thought she had a bad sunburn… Lillian had gone camping with her daughter and her Girl Scout troop in…
Lisa’s MOG Story – Using Writing & Crafting to Cope With Chronic Disease
Lisa’s MOG Story – Using Writing & Crafting to Cope With Chronic Disease
It was the late 1990’s. I was in my 30’s had constant pain down my left arm, and even though…
Liz’s MOG Story – In Orbit, Flying High
Liz’s MOG Story – In Orbit, Flying High
  Liz has had NMO for 25 years now.  She’s only known it for ten… Since she’d had migraines throughout…
Lois’ NMO Story – Forging a New Pathway in Life
Lois’ NMO Story – Forging a New Pathway in Life
Ghanaian-born and UK-raised, I was diagnosed with aquaporin-4 positive (AQ4+) neuromyelitis optica spectrum disorder (NMOSD) in May 2023, which was…
Maggie’s NMO Story – Finding Miracles in the Micro-Moments
Maggie’s NMO Story – Finding Miracles in the Micro-Moments
I am a caregiver to my daughter, Nell, who was diagnosed with NMO at age 9. Prior to her diagnosis,…
Mamiko’s NMO Story – Opera, NMO and New Adventures
Mamiko’s NMO Story – Opera, NMO and New Adventures
Born and raised in Tokyo, Mamiko Sakaida always loved singing and wanted to become an opera singer. In pursuit of her making…
Marc’s NMO Story – Me, Myself and NMO
Marc’s NMO Story – Me, Myself and NMO
It started innocuously. In 2008 we moved to Ottawa with my employer for my career in pest control. On a…
Marie’s NMO Story – Stronger Than You’d Know
Marie’s NMO Story – Stronger Than You’d Know
Nothing can fell Marie. No matter the punches that NMO throws, Marie just gets up again and keeps on going.…
Marie’s NMO Story – Welcome to Chapter 2
Marie’s NMO Story – Welcome to Chapter 2
Hello. Hola. My name is Marie and I am proud to be the Welcome Manager for The Sumaira Foundation. I…
Marion’s NMO Story – One Diagnosis, Three Marathons, Infinite Strength
Marion’s NMO Story – One Diagnosis, Three Marathons, Infinite Strength
In 2019, I discovered a surprising new passion for running, completing 35 5Ks in 35 weeks and finding it to…
Mary Lou’s NMO Story – Learning & Sharing NMO
Mary Lou’s NMO Story – Learning & Sharing NMO
  My name is Mary Lou Gallegos. I was born and raised in San Antonio, Texas. I am the co-owner/founder…
Matt’s NMO Story – Driven for His Daughter
Matt’s NMO Story – Driven for His Daughter
With respect to the patient’s desire to remain anonymous, we will refer to him as Matt.  It started along with…
Matthias’ NMO Story – The Gift of Support
Matthias’ NMO Story – The Gift of Support
The first time NMO hit me was on the evening before Thanksgiving in 2010… I clearly remember it because  my…
Maureen’s NMO Story – NMO & My Life
Maureen’s NMO Story – NMO & My Life
This disease began with hiccups and vomiting 25+ times a day. I was certain that I had gotten food poisoning…
Maureen’s Story – Experiences From the Bedside & Research
Maureen’s Story – Experiences From the Bedside & Research
Maureen is a nurse. She worked in neurocritical care at Johns Hopkins Hospital for many years before she had ever…
Maurita’s NMO Story – Working Hard & Working Through
Maurita’s NMO Story – Working Hard & Working Through
She thought it might be her fault. After all, she was working 14-hour days driving a truck, going to school…
Max’s MOG Story – The Luckiest Kid in the World
Max’s MOG Story – The Luckiest Kid in the World
On a warm February evening at the University of Miami, I sat in my Music Business lecture and wondered from…
Megan’s NMO Story – Coping via Cosmetics
Megan’s NMO Story – Coping via Cosmetics
Meet Megan, a 16 year old NMO patient who and YouTube sensation (@PerfectlyKnitBeauty) who has been coping with her chronic…
Megan’s NMO Story – Your Average Girl Living in a Chronic Illness World
Megan’s NMO Story – Your Average Girl Living in a Chronic Illness World
My biggest fear in life was that I would have some incurable sickness or disease. Not heights, nor spiders, nor…
Mileidys’ NMO Story – It May Not Be Easy, But It Is Not The End
Mileidys’ NMO Story – It May Not Be Easy, But It Is Not The End
I was born and raised in Cuba where I played outside, ran, and enjoyed time with my friends. In my…
Mitchel’s NMO Story – Stronger Than Strong
Mitchel’s NMO Story – Stronger Than Strong
My name is Mitchel Navarro. I’m 34 years old, a wife, and a proud momma to two beautiful children –…
Mouli’s MOGAD Story – Smiling Through the Storm
Mouli’s MOGAD Story – Smiling Through the Storm
In 2022, my life took an unexpected turn. It all began with a high fever that started on August 31st…
Nakeshia’s MOG Story – Finding Purpose Amidst the Darkness
Nakeshia’s MOG Story – Finding Purpose Amidst the Darkness
Every day we wake up, we surely never expect our day to end with everything turned upside down – and…
Nell’s NMO Story – My Hospital Story
Nell’s NMO Story – My Hospital Story
My first NMO symptoms hit three years ago when I was 9; I’m 12 now. To be fully transparent, I…
Nick’s NMO Story – A Mother’s Perspective
Nick’s NMO Story – A Mother’s Perspective
In early November 2000, Nick came down with viral symptoms. He was just done eating dinner when he vomited across…
Nick’s Story: How I Turned Diagnosis into Advocacy: Navigating NMOSD, MS and LGBTQIA+ Representation
Nick’s Story: How I Turned Diagnosis into Advocacy: Navigating NMOSD, MS and LGBTQIA+ Representation
On January 30, 2023, I was diagnosed with relapsing-remitting multiple sclerosis following the onset of nearly complete vision loss in…
Nicki’s NMO Story – Taking on NMO One Day at a Time
Nicki’s NMO Story – Taking on NMO One Day at a Time
While 2018 came ringing in with optimism, I was back in school getting my business degree and making moves to…
Nicole’s NMO Story – A Woman Who Never Stopped Trying
Nicole’s NMO Story – A Woman Who Never Stopped Trying
Nicole was a first-grade teacher and chorus director in a Title 1, low-income school district, where she was a beloved,…
Noelani’s NMO Story – Ignition
Noelani’s NMO Story – Ignition
Hi, my name is Noelani. I am 30 years old, was born and raised in Hawaii but currently reside in…
Nuestra Historia: Tomás Morales Sánchez, Una Batalla Que No Elegimos Pero Que Enfrentamos Con Amor
Nuestra Historia: Tomás Morales Sánchez, Una Batalla Que No Elegimos Pero Que Enfrentamos Con Amor
Mi nombre es Ángela Sánchez Berrio, y quiero compartir con ustedes la historia de mi hijo Tomás Morales Sánchez, con…
Paige’s NMO Story – A Baby & A New Diagnosis
Paige’s NMO Story – A Baby & A New Diagnosis
My NMO journey started just a few weeks after having my first baby girl in August 2020. Being a first…
Pam’s NMO Story – How NMO Reinforced Positivity
Pam’s NMO Story – How NMO Reinforced Positivity
On Monday morning, Pam had a headache. For a woman who never got headaches, this was notable.  In addition, when…
Patty’s NMO Story – Is It MS or Could It Be Something Else?
Patty’s NMO Story – Is It MS or Could It Be Something Else?
I was 33 years old in 1993, when I experienced a sudden attack of optic neuritis, an inflammation that damages…
Paula’s NMO Story – A Walking Miracle
Paula’s NMO Story – A Walking Miracle
  Paula is a walking miracle. She looks good, feels good and can do most everything she ever did in…
Pauline’s NMO Story – A Nurse’s Instincts
Pauline’s NMO Story – A Nurse’s Instincts
My name is Pauline Richardson nee Grant. I grew up on a farm in Jamaica. My mom, being a cheerful…
Phil’s NMO Story – A Journey to a Diagnosis
Phil’s NMO Story – A Journey to a Diagnosis
Here is my story of how I was diagnosed with Neuromyelitis Optica and just how scary it can be knowing…
Preethi’s TM Story – Hope Forever Prevails
Preethi’s TM Story – Hope Forever Prevails
I am Preethi, residing in Coimbatore, famously known as the Manchester of South India. This narrative is a chronicle of…
Rashmi’s NMOSD Story – #FirmFaithToFight
Rashmi’s NMOSD Story – #FirmFaithToFight
My name is Rashmi and I have been living with NMOSD since 2015. I’m sharing my story with all of…
Ria’s NMO Story – Stronger Than You Know Fighting NMO
Ria’s NMO Story – Stronger Than You Know Fighting NMO
Recently, Ria’s mother’s blood pressure climbed dangerously high.  Her father is scheduled for a triple bypass later this week.  It’s…
Rita’s NMOSD Story – A Surprise Condition That Dimmed My Eyes
Rita’s NMOSD Story – A Surprise Condition That Dimmed My Eyes
My name is Rita Ddungu Sembuya and I am from Kampala, Uganda. I am a patient living with neuromyelitis optica…
Roberto’s NMOSD Story – Unbreakable Rafaela: A Story of Strength, Fear, and Recovery
Roberto’s NMOSD Story – Unbreakable Rafaela: A Story of Strength, Fear, and Recovery
My name is Roberto and I am a practicing attorney in Barcelona. When I think back to my childhood, one…
Robin’s NMO Story – Living in the Moment with NMO
Robin’s NMO Story – Living in the Moment with NMO
I was diagnosed with Neuromyelitis Optica on July 25, 2015.  My story is a little different than many of the…
Ron’s NMO Story – NMO & Me
Ron’s NMO Story – NMO & Me
Today this is where I am – right here and right now. God has a plan, yesterday is gone and…
Ronae’s NMO Story – God & NMO
Ronae’s NMO Story – God & NMO
It was December 2019. I struggled almost every day with tension headaches (eyes and nose). My primary care doctor suspected…
Rosa’s NMO Story – NMO Across Borders
Rosa’s NMO Story – NMO Across Borders
On April 29, 1984, I landed at Boston’s Logan Airport with two suitcases and a seven-year-old girl holding my hand.…
Roxy’s Story – Denial, Disbelief, and Disability
Roxy’s Story – Denial, Disbelief, and Disability
Hello fellow NMO sisters and brothers. My name is Roxana aka “Roxy”. I was diagnosed with NMO in June 2011…
Rué’s NMOSD Story – A Deeper Hope
Rué’s NMOSD Story – A Deeper Hope
My journey began in 2013 when I was 11 years old. I was experiencing severe symptoms of neuromyelitis optica spectrum…
Ryan’s NMO Story – NMO is my New Normal
Ryan’s NMO Story – NMO is my New Normal
My name is Ryan. Three years ago, I was living the dream. I was happily married to my best friend,…
Savannah’s NMO Story – I’m Done Apologizing for Not Showing Up
Savannah’s NMO Story – I’m Done Apologizing for Not Showing Up
I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind…
Scott’s MOG Story – Personal Accountability to Advocating for Others
Scott’s MOG Story – Personal Accountability to Advocating for Others
On Monday, I woke up with a slight ache on the left side of my lower back which felt numb,…
Shanice’s NMO Story – Caffeine Withdrawal or Something Serious?
Shanice’s NMO Story – Caffeine Withdrawal or Something Serious?
My name is Shanice. I was born and raised in Jamaica and now reside in Toronto in Canada. I am…
Shantrice’s NMO Story – A Fear You Just Can’t Break
Shantrice’s NMO Story – A Fear You Just Can’t Break
It all started when I was 20 years old – I went to urgent care because I was experiencing excruciating…
Sherry’s NMO Story – From Caregiver to Needing the Care
Sherry’s NMO Story – From Caregiver to Needing the Care
My name is Sherry. My experience with my disease is a little different and backwards… I was taking care of…
Shiela’s NMO Story – Battling NMO in the Philippines
Shiela’s NMO Story – Battling NMO in the Philippines
Greetings Everyone, I’m Shiela Marie Sta. Maria Rutaquio, from Binangonan, Rizal 1940 Philippines, who have this rare and incurable autoimmune…
Sinead’s NMO Story
Sinead’s NMO Story
I was 7 years old and after a normal school day, I noticed blurred vision in my left eye. As…
Sofia’s NMO berättelse – Alltid en väg framåt (Always a Way Forward)
Sofia’s NMO berättelse – Alltid en väg framåt (Always a Way Forward)
The year was 2007 and I had just returned to school from summer break, twelve years old and excited to…
Sonali’s NMO Story – The Best Laid Plans
Sonali’s NMO Story – The Best Laid Plans
When you and God have different plans, stories like ours get created. My name is Sonali Tambatkar and I live…
Storia NMO di Elena – Ciao Bella!
Storia NMO di Elena – Ciao Bella!
Nel mese di marzo 2012 avevo appena trovato lavoro a più di 60 chilometri da casa ma era il lavoro…
Sumaira’s NMO Story (from The Transverse Myelitis Association Blog – In Their Own Words”)
Sumaira’s NMO Story (from The Transverse Myelitis Association Blog – In Their Own Words”)
Sumaira’s NMO Story From the Transverse Myelitis Association blog, In Their Own Words (October 4, 2018) My name is Sumaira and…
Tamanika’s NMO Story – It Takes A Village
Tamanika’s NMO Story – It Takes A Village
Tamanika Zinger was on her first date with her now husband, 16 years ago when she experienced her first symptoms…
Tanishia’s NMO Story – As Told By Her Sister
Tanishia’s NMO Story – As Told By Her Sister
Neuromyelitis Optica – a rare disease that appeared out of the blue and had a mission to suck the life…
Taylor’s NMOSD Story – The Brightest Days Are Ahead
Taylor’s NMOSD Story – The Brightest Days Are Ahead
It was October 2019, I was a young mom at 25 years old toting around a toddler and an infant,…
Terry’s NMO Story – The Perfect Storm
Terry’s NMO Story – The Perfect Storm
September 2021 marked the perfect storm for NMO – a combination of a long-term infection and a viral illness. During…
Theresa’s NMO Story – Facing One Day at a Time…
Theresa’s NMO Story – Facing One Day at a Time…
Imagine this: You’re driving on a highway, and suddenly, your hands stop working completely.  You can’t grip the wheel. Imagine…
Therese Burke’s Story – IMPROVING CARE THROUGH PATIENT PARTNERSHIPS
Therese Burke’s Story – IMPROVING CARE THROUGH PATIENT PARTNERSHIPS
It was over a decade ago, but I remember it like yesterday, the first patient I looked after with NMOSD.…
Thriving Through CNS Vasculitis: Vanessa’s Journey as a Mama, RDN and Unicorn
Thriving Through CNS Vasculitis: Vanessa’s Journey as a Mama, RDN and Unicorn
My name is Vanessa, I’m living with CNS vasculitis—and thriving. It’s been a journey marked by uncertainty, grit, and an…
Tiffany’s NMO Story – Navigating the Navy with NMO
Tiffany’s NMO Story – Navigating the Navy with NMO
Tiffany was a military brat with both of her parents serving in the Navy, so joining up herself seemed the…
Veronica’s NMO Story – NMO Benched Him but Faith Keeps Him Swinging #MayberryStrong
Veronica’s NMO Story – NMO Benched Him but Faith Keeps Him Swinging #MayberryStrong
My name is Veronica and this is my NMO story. I am not a patient but a mother/caregiver of an…
Virginia’s MOG story – A little child shall lead them Isaiah 11.6
Virginia’s MOG story – A little child shall lead them Isaiah 11.6
Virginia was only 10 when, while checking the mail one day in April, she noticed a grayness in her vision,…
When Vision Fades, Strength Rises – Pournamy’s Fight with NMOSD
When Vision Fades, Strength Rises – Pournamy’s Fight with NMOSD
My story with neuromyelitis optica spectrum disorder (NMOSD) began in 2021, although at the time, I had no idea what…
Yaracelly’s Voces de NMO – DE FISIOTERAPEUTA A PACIENTE
Yaracelly’s Voces de NMO – DE FISIOTERAPEUTA A PACIENTE
Mi nombre es Yaracelly Gaona, soy panameña, estoy casada, tengo 35 años y una hija de 7 años.  A mis 28 años, días…
Yoka’s MOG Story – My Dutch MOG Story
Yoka’s MOG Story – My Dutch MOG Story
Clean and clear were my glasses but still I had trouble seeing clearly with my right eye. On Easter Monday…
Zoe’s Story – You Never Know How Strong You Are Until Being Strong Is Your Only Choice
Zoe’s Story – You Never Know How Strong You Are Until Being Strong Is Your Only Choice
I am Zoe and I am from Cyprus aka I am a Greek Cypriot. I had no health issues at…
小高的NMO之路 (Xiao Gao’s NMO Story)
小高的NMO之路 (Xiao Gao’s NMO Story)
这是一个有关中国NMO之家联合创始人小高从病痛中“站起来”，重新出发去寻找生命意义的故事。现在，他期待着NMO病友大会在中国举办，期待着与TSF共同用我们的努力照亮NMO和MOG患者的世界。他说他还会继续在NMO病友会的建设上走很远很远的路，直到医学领域发现治愈的光芒，直到病友们能摆脱疾病带来的痛苦，直到NMO和MOG病友们都能重新拾起对世界的热爱…

Industry Partners

Alexion Genentech Portal Instruments ucb logo

Community Partners

Autoimmune Association Brain Health Center of the Rockies couch pennies foundation emsp global advocacy alliance National Infusion Center Association Neurology Live Logo Siegel Rare Neroimmune Association