Kayla was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD), a rare, demyelinating autoimmune disease which affects the central nervous system. Governor Gretchen Whitmer is bringing awareness to this disorder to promote research, understanding, and ultimately find a cure.

#NMOSD #NMO #raredisease #findacure

Join Nicki, Ambassador of New York and Kayla, Ambassador of Michigan for HCPs Thursday support group. Everyone is welcome as we come together to support each other in a safe place. Please register by visiting tinyurl.com/TSFHCP #NMOSD #MOGAD #NMO #NMOSDWontStopMe

🇨🇦🇺🇸 On March 9th, the majestic Niagara Falls was illuminated pink to honor TSF's #NMOSD Awareness Month (March) & #MOGAD Awareness Month (April)🩷🧠🌺 Thank you Niagara Falls Canada / Niagara Falls USA for celebrating with us for the 3rd year in a row #10YearsOfTSF #TSFNMO2024

🌱Please join us tomorrow 4/20, as we learn from Dr. Aaron Boster the use of medical #cannabis to help those affected by #neurological conditions along with a Q&A. #NMOSD #MS To register, please click the link: us02web.zoom.us/webinar/regist…

💖Inviting all #NMOSD & #MOGAD patients, caregivers and clinicians in Cleveland and the surrounding areas to join us Saturday, June 15 for TSFs Cleveland Patient Day Cleveland Clinic! I hope to see you there with me! Register: eventbrite.com/e/tsfs-clevela…

Inviting all #NMOSD & #MOGAD patients, caregivers and clinicians to join us Saturday, June 15 for TSFs Cleveland Patient Day Cleveland Clinic! I hope your able to join us!! It'll be a wonderful impactful day 💗 Register: eventbrite.com/e/tsfs-clevela…

Physical therapy isn't just exercise; it's a lifeline. Learn more from Dr. Gretchen Hawley PT, DPT, MSCS in our latest episode. The Sumaira Foundation Genentech #nmo #nmosd #mog #mogad #ms #pt #TSF_MoveForNMOG podcasts.apple.com/us/podcast/epi…

Very disappointed! I stayed in an #accessible room only to find out it's a bathtub along with having 0 shower chairs. I had to buy one, build it and struggled to even get in to shower. Of course, the GM didn't care!#accessibility #ADA #accessiblehotels #inclusion #wheelchairuser

This weekend I was able to talk about being a patient living with seronegative #NMOSD at Cleveland Clinic! I loved meeting everyone and reuniting with my #NMO & #MOGAD family. Thank you so much to the The Sumaira Foundation for this opportunity! 🩷🧡💛 #NMOSDWontStopMe #raredisease

Very disappointed w/ ExtendedStayAmerica! I stayed in an #accessible room only to find out it's a bathtub along with having 0 shower chairs. I had to buy one, build it and struggled to even get in to shower. Of course, the GM didn't care!#accessibility #ADA #inclusion #wheelchairuser

Summer is here which means so is the HEAT! Here are few tricks to cope with excessive heat during the hottest months of the year: 🫗 Hydrate 🥗 Eat water-rich foods 🧢 Protect your skin 🏡 Improve your home setting with a fan and/or air conditioner 👂 Listen to your body

Kayla Miller, seronegative #NMOSD patient and TSF Ambassador of Michigan, shares her experience participating at our recent Cleveland Patient Day in collaboration with Amy Kunchok, Mary Rensel MD FAAN ABIHM and Justin Abbatemarco youtu.be/k_ILyPkIBlQ?si…

🇨🇦 Happy #CanadaDay (July 1) from all of us at TSF Canada! Watch our video to see all that our Canadian Ambassadors have accomplished for #NMOSD, #MOGAD, #AE and other rare neuroimmune disorders over the last year🍁 To contact TSF Canada, email [email protected]

🇲🇽 Ernesto, paciente de #MOGAD, ha realizado con éxito la media maratón del evento Maratón Bambino Veracruz 2024. De estar internado en Junio y recibir el diagnóstico, nos ha demostrado que no existen límites para el cuerpo humano con la mentalidad correcta 🏃🏽‍♂️💪🏽 Jose Flores Rivera

Until the #340B Program loophole is fixed with full transparency, #SB1179 isn't the answer #Michigan! Vote NO Michigan House Republicans & MI House Democrats! Data shows patients at 340B hospitals are paying 150% more for their prescriptions than patients at non-340B hospitals. ~#RarePatient

Today, we visited the U.S. FDA & learned about how they support Phase IV trials. #NMOSD is fortunate to have 4 highly-efficacious FDA-approved therapies that have completely transformed the prognosis of the disease.

Happy Holidays from Michigan Rare Coalition! We’re grateful for our incredible rare disease community—who make our mission stronger every day. Wishing you peace and hope this Holiday Season and a bright start to the New Year! The Michigan Rare Coalition Team #MiRare