TSF | 6 years of Illuminating the Darkness

TSF's icon is a pink gerbera daisy which symbolizes purity and cheerfulness. Our primary colors are pink, orange + marigold. MISSION Dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD), fundraising to find a cure, and creating a community of support for patients + their caregivers. VISION Illuminating the darkness of neuromyelitis optica. PHILOSOPHY In 2014, this organization was founded based on the theory that heightened awareness and visibility of NMO will enhance funding to accelerate research to eventually find a cure.

TSF BOARD Sumaira Ahmed Melissa Barash Founder & Executive Director Chief Strategy Officer [email protected] [email protected] Gabriela Romanow Greg Santos, ESQ Chief Community Relations Officer General Counsel [email protected]

TSF BOARD Dean Elizabeth Michael Fortin, MD Cestari, MD Levy, MD, PhD Neuro-Ophthalmology Neuro-Ophthalmology Neuroimmunology Massachusetts Eye Massachusetts Eye Massachusetts & Ear Infirmary & Ear Infirmary General Hospital Bart Tamara Marcelo Kaplan, MD Matiello, MD Chwalisz, MD Neurology Neurology Neuro-Ophthalmology Brigham and Women's Massachusetts Massachusetts General Hospital Hospital General Hospital Stacey Joshua Samir Clardy, MD, PhD Katz, MD Melki, MD, PhD Neuroimmunology Neurology Ophthalmology University of Utah Health The Elliot Lewis Center Boston Laser Boston Eye Group

TSF BOARD Sabrina Cynthia Ahmed Cicchese Events Events Mary McAlary Health + Wellness Lauren Marissa Michaels Shackleton Fundraising Education WWW.SUMAIRAFOUNDATION.ORG

The TSF Ambassador Program is an invitation-only initiative for passionate individuals eager to illuminate the darkness of neuromyelitis optica and MOG-AD on behalf of The Sumaira Foundation for NMO. The ambassador represents the Foundation’s brand, helping to lead the TSF mission and movement in their local community. Motivated, self-starting, and creative, this individual serves as an extension of the board and adheres to all standards and expectations set forth by the executive committee. One-year terms with annual review to determine if the ambassadorship will be renewed for another year. Drive NMO awareness & education via social media and events Increase TSF for NMO's footprint online and in your local community Fundraise for research Contribute innovative & unique program ideas that align with TSF for NMO's mission WWW.SUMAIRAFOUNDATION.ORG

Ron Crowe Jennifer van ALABAMA Amerom CANADA Tamanika Zinger ARIZONA Candive Galvan COLORADO Veronica Estrada *Caregiver CALIFORNIA *Caregiver Nicole Jacome FLORIDA Ria Fincham CALIFORNIA Karla Navarro FLORIDA Lelainia Lloyd CANADA Arlena Johnson KENTUCKY

AnneMarie Alexis Marta Nawrocki NEW JERSEY ILLINOIS Jamie Ahlawat Ryan Farrell NEW JERSEY MASSACHUSETTS Marie Abrego Tami Freeman NEW MEXICO MICHIGAN *Caregiver Nicole McLaud NEW YORK Ed Horn NEW HAMPSHIRE Leah Campbell OKLAHOMA

Joyce Elizabeth Grassmyer Mayben PENNSYLVANIA TEXAS Diane Schlegel Laura Hinde PENNSYLVANIA UNITED KINGDOM Letitia Julie Aldridge Annamalay WEST VIRGINIA SOUTH AFRICA Alyson Tignor Chelsey Tucker VIRGINIA TENNESSEE Kristen Hewitt TEXAS

Voices of NMO™ is TSF's flagship storytelling platform featuring a library of 90+ and counting stories in written, visual, and audio formats. TSF works with the community to gather and share stories from a variety of perspectives from anyone impacted by NMO or MOG-AD. Our library consists of stories from patients, family and friends, caregivers, doctors, infusion nurses, and researchers. Each storyteller shares their personal story, elucidating the wide range of experiences, symptoms and treatments, and mostly their own journeys with the disease. We help reveal mysteries of a disease that can have symptoms V O I C E Sas disparate as sudden blindness, tingling in a foot, extensive hiccups and burning pain. By elevating these stories, OF professionals reading and hearing these stories become better equipped to diagnose and even treat these rare disorders. We also hope that patients and their loved ones reading and hearing these stories feel less isolated, empowered, and part of a community that is working together to help find a cure. We invite the entire community to participate with us by telling their own stories. A TSF volunteer will listen and write up the stories for those not comfortable writing or recording in their own voice, 3 Ways to Submit: Write and submit your story with photos attached Record a video and submit your story Schedule a phone/Skype interview so TSF can write your story

WWW.SUMAIRAFOUNDATION.ORG

Volumetric Analysis in MOG-AD, NMOSD, and MS Principle Investigator | Eyal Lotan, MD, PhD Affiliated Institution | NYU Langone Health Amount Awarded | $25,000 Aim | To analyze the different patterns of central nervous system atrophy in MOGAD, NMOSD and MS Patients. Notes | 1st TSF x Viela Bio \"Light the Way Forward\" Grant Autoantibodies in NMOSD Principle Investigators | Stacey Clardy, MD, PhD & Jonathan Galli, MD Affiliated Institution | University of Utah Health Amount Awarded | $25,000 Aim 1 | To describe the epidemiologic characteristics of all patients who carry a diagnosis of NMOSD within the Department of Defense/Defense Medical Surveillance System (DMSS) Aim 2 | To confirm the presence of Aquaporin-4 and MOG autoantibodies in pre-symptomatic NMO samples.

Investigating a Relapse Biomarker in MOG Principle Investigator | Tanuja Chitnis, MD Affiliated Institution | Brigham & Women's Hospital Amount Awarded | $25,000 Aim 1 | To evaluate dynamics of TNFAIP3 as a relapse biomarker in adults and children with MOG-AD. Aim 2 | To evaluate the effects endogenous and exogenous steroids on levels of TNFAIP3 in patients with MOG-AD. Link between MOG & Cholesterol Principle Investigator | Michael Levy, MD, PhD Affiliated Institution | Massachusetts General Hospital Amount Awarded | $25,000 Aim | To repurpose existing medications to stop the inflammatory process in patients with MOG antibody disease. Diagnostics for NMOSD Principle Investigator | Farrah Mateen, MD, PhD Affiliated Institution | Massachusetts General Hospital Amount Awarded | $25,000 Aim | To pilot a novel point-of-care dry blood spot diagnostic test for patients with aquaporin 4-antibody (AQP4) seropositive neuromyelitis optica spectrum disorder (NMOSD).

Severe NMO / MOG / Idiopathic Optic Neuritis Treatment Analysis Principle Investigator | Kristin Galetta, MD Affiliated Institution | Massachusetts General Hospital Amount Awarded | $10,000 Aim | To address how to best treat patients with attacks of severe optic neuritis. Established in March 2019, Joannie’s Unicorn Grant was created to specifically fund pediatric NMO research in honor of Joannie Rios, a 6-year old girl from Rochester, New York who lost her battle to neuromyelitis optica in February 2019. Therapeutic Response in Pediatric NMOSD Principle Investigator | Tanuja Chitnis, MD Affiliated Institution | Brigham & Women's Hospital Amount Awarded | $10,000 Aim | To evaluate the effect of different disease modifying treatments on attack and disability prevention in children with neuromyelitis optica spectrum disorder.

Global NMO Atlas Principle Investigator | Farrah Mateen, MD, PhD Affiliated Institution | Massachusetts General Hospital Amount Awarded | $10,000 Aim | To understand availability and affordability of NMOSD testing and treatments in developing countries. Publication [CLICK] Neuromyelitis optica testing and treatment: Availability and affordability in 60 countries (published in Multiple Sclerosis and Related Disorders journal – May 2019 Edition) Immune Tolerization Principle Investigator | Tanuja Chitnis, MD Affiliated Institution | Brigham & Women's Hospital Amount Awarded | $8,000 Aim | To use Immune Tolerance as a method to prevent NMOSD attacks while retraining the immune system to no longer attack the brain and spinal cord.



Our industry partners include the pharmaceutical companies dedicated to developing therapies for patients diagnosed with neuromyelitis optica spectrum disorder (NMOSD). WWW.SUMAIRAFOUNDATION.ORG

The organizations that we choose to partner with have demonstrated mission-aligned efforts to illuminate the darkness of NMOSD, support the community at-large, and fund research to find a cure for neuromeylitis optica. WWW.SUMAIRAFOUNDATION.ORG

In 2015, TSF became a participating charity in Amazon's Smile program which donates 0.5% of eligible purchased to the foundation. Simply visit smile.amazon.com, choose \"Sumaira Foundation\" as your default charity, and start shopping! In 2018, TSF became a participating charity in Charity Charge, the only credit card that allows you to automatically earn and donate 1% of your purchases to TSF. No annual fees and tax deductible. Click for more information and to apply. Tree-Nation is the platform to reforest the world and fight climate change. Plant trees and offset your CO2 emissions while illuminating the darkness of neuromyelitis optica. WWW.SUMAIRAFOUNDATION.ORG

[email protected] TheSumairaFoundation [email protected] [email protected] thesumairafoundation [email protected] [email protected] The Sumaira Foundation for NMO The Sumaira Foundation for NMO P.O. Box 161 TheSumairaFDN Brookline, MA 02446 47-2398246 The Sumaira Foundation WWW.SUMAIRAFOUNDATION.ORG