TSF's 5-Year IMPACT Report

5 I M PAC T Y RE E P O R T A R Illuminating the darkness of neuromyelitis optica

FOUNDER’S NOTE R.M. Drake famously said, “there was a Flower in her heart, It just needed more room to bloom. And when she let it free, she showed the world that sometimes the most beautiful things can grow from the darkest of places without the need of light.” It’s been a little over five years since founding The Sumaira Foundation for NMO (TSF). What began as a desperate journey to save my own life has blossomed into a growing organization that gives voice to our small yet mighty community and serves as a beacon of hope. The first few years were dedicated to crystallizing our brand, developing our network, and determining how to best align our skills with the community’s needs. The public dialogue around NMO was rather quiet but once the inflection point occurred, our voices became audible and the impact felt palpable. We’ve been fortunate to witness tremendous leaps and bounds in the world of NMO research. In 2019, the first FDA-approved therapy became available to patients, paving the way for two new therapies currently in the pipeline. March has been declared as NMO awareness month in almost all 50 states across the United States. The community has more thought leaders and advocates than ever before. All of this progress is a direct result of the power of the collective; the only way we can accelerate our movement is by working together. I am hopeful that with your support, TSF can continue to embed the importance of “know- ing” and prioritize awareness, elevate education among medical providers, empower the community by providing support and a voice, and award the financial resources needed to push the envelope in NMO research. Our momentous growth would not be possible without the support of the TSF board, ambassadors, donors, partners, researchers, and sponsors. Together, we are magnifying NMO’s footprint. Let’s continue to bloom and illuminate the darkness of neuromyelitis optica. Hugs and love, Sumaira

CONTENTS MISSION EVENTS OUR PARTNERS 4 8 13 MEET THE TEAM VOICES OF NMOTM LET’S CONNECT 5 10 15 RESEARCH GRANTS AMBASSADORS 6 12

Dedicated to generating global Illuminating the darkness awareness of neuromyelitis optica of neuromyelitis optica spectrum disorder (NMOSD), fundraising to find a cure, and creating a community of support for patients + their caregivers. MISSION MV VISION P 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. 4

MEET THE TEAM Executive Committee Medical Board Advisory Board Dean Cestari, MD* Joshua Katz, MD Sabrina Ahmed* Mary McAlary Sumaira Ahmed* Bart Chwalisz, MD Michael Levy, MD Cynthia Cicchese* Lauren Michaels Melissa Herman* Elizabeth Fortin, MD Marcelo Matiello, MD Christopher Lee, CPA* Greg Santos ESQ* Gabriela Romanow Tamara Kaplan, MD Samir Melki, MD, PhD* *founding member 5

RESEARCH GRANTS TSF’s SPARK Grants are awarded annually to non-profit organizations, researchers, and/or institutions engaged in research into prevention, treatments, and a cure for NMOSD. 2018 NMO Testing & Treatment: Availability and Affordability in 60 Countries Principle Investigator | Farrah Mateen, MD, PhD Affiliated Institution | Massachusetts General Hospital, Boston, MA Aim | To initiate assessment of NMO practices and barriers to care in countries where little information is currently known Publication | Multiple Sclerosis and Related Disorders Journal (May 2019) 2018 Immune Tolerization to Prevent NMO Attacks - Tanuja Chitnis, MD Principle Investigator | Tanuja Chitnis, MD Affiliated Institution | Brigham and Women’s Hospital, Boston, MA Aim | To use the concept of tolerization to prevent NMO attacks, and retrain the immune system to no longer attack the brain and spinal cord 2019 Severe NMO/MOG/Idiopathic Optic Neuritis Treatment Analysis Principle Investigator | Kristin Galetta, MD Affiliated Institution | Massachusetts General Hospital, Boston, MA Aim | Address how best to treat patients with attacks of severe optic neuritis and recommend best practice guidelines for treatment 6

Joannie’s Unicorn Grant was established in March 2019 and 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. 2019 Therapeutic Response in Pediatric NMOSD Principle Investigator | Tanuja Chitnis, MD Affiliated Institution | Brigham and Women’s Hospital, Boston, MA Aim | To evaluate the effect of different disease modifying treatment on attack prevention and disability prevention in children with neuromyelitis optica spectrum disorder. 7

EVENTS Fundraisers 2015 - Sunday FUNDay Inaugural Fashion Fundraiser at ROW34 - Boston, MA 2015 - Light[Up] NMO @ Linked[In] NYC at Empire State Building, New York, NY 2016 - 1st Annual NMO Awareness Gala at Liberty Hotel - Boston, MA 2017 - 2nd Annual NMO Awareness Gala at Mandarin Oriental - Boston, MA 2017 - Alice + Olivia shop event - Boston, MA 2018 - 3rd Annual NMO Awareness Gala at Mandarin Oriental - Boston, MA 2019 - Pom for NMO at Barre Groove - Boston, MA 2019 - 4th Annual NMO Awareness Gala at Mandarin Oriental - Boston, MA 2019 - 30 Years of Sumz / 5 Years of TSF Community Events 2017 NMO Picnic in the Park - Boston Common, Boston, MA 2019 NMO Wellness Day - Spaulding Rehab, Boston, MA Education Events 2018 The Chef + The Doctor - New York, NY 2018 NMO Physicians Round Table - Boston, MA Sponsored Events 2016 New England NMO Patient Day (MGH/BWH) 2017 New England NMO Patient Day (MGH/BWH) 2018 Rare Neuroimmune Disorders Symposium - Boston, MA (SRNA) 2019 Rare Neuroimmune Disorders Symposium - Columbus, OH (SRNA) 2019 Autoimmune Neurology CME - Boston, MA (MGH) 8

TSF events bring our community together in creative ways! 1,215+GRANDof TOTAL PARTICIPANTS 9

VOICES OF NMO™ Voices of NMO™ is TSF’s flagship storytelling platforms that features written, visual, and audio content, sharing the experiences of those impacted by NMO to a global audience. We gather and disseminate stories of people coping with neuromyelitis optica from all perspectives around the globe. We hear from patients, family members and friends, caregivers, doctors, infusion nurses, and researchers. Each participant tells their personal story with NMO, elucidating the wide range of experiences, symptoms and treatments, and mostly their own journeys with the disease. These stories help reveal mysteries of a disease that can have symptoms as disparate as sudden blindness, tingling in a foot, extensive hiccups, violent vomiting, and burning pain. By elevating these experiences, professionals reading and hearing these stories may become better equipped to diagnose and even treat this rare disorder. We hope those reading and hearing the stories feel less alone, gain a sense of belonging, and feel empowered by these inspiring journeys. TSF invites the entire NMO community to participate with us by sharing their stories. We have volunteers who will listen and write up the stories for those not comfortable writing or recording in their own voice. 10

# of stories shared = 67 as of 12/31/2019 patients clinicians caregivers researchers ALL ARE ILLUMINATING THROUGH THE DARKNESS 11

TSF AMBASSADORS A TSF Ambassador is a patient, caregiver, or loved one who represents the organization, mission, and movement in their local community. Launched in 2019, the program currently has 12 ambassadors and will continue to add ambassadors to eventually have representation in all 50 states across the nation. Lisa Kovanda Tami Freeman Nicole McLaud Andrea Mitchell NE NY Diane Schlegel Veronica Estrada MI PA CA NJ Jamie Ahlawat AZ NM OK TN Tamanika Zinger Ashlee Olsen Marie Abrego FL Chelsey Tucker Leah Campbell 12

COMMUNITY PARTNERS Siegel Rare Neuroimmune Association (SRNA) | TSF and SRNA established a partnership in their mutual quest to raise awareness for neuromyelitis optica (NMO). Both organizations specialize in raising awareness for rare neuro-immune disorders while supporting patients and their caregivers. Connor B. Judge Foundation (CBJF) | A key initiative of the TSF and CBJF partnership is to create relevant scientific educational content that will empower neurological autoimmune patients and their loved-ones to be well-informed. The goal is to provide a translation of difficult-to-understand but important scientific concepts related to neurological autoimmune diseases into layperson’s terms. Together, they have produced Demystifying NMO, a podcast aimed to simplify and discuss relevant topics engaging the expertise of clinical experts and members of the patient community. The MOG Project | TSF and The MOG Project joined to co-develop a social media campaign titled, MOGmentum, aimed to educate the lay public about MOG-AD (myelin oligodendrocyte glycoprotein antibody disease). Global Genes RARE Foundation Alliance | TSF is a proud member of The RARE Foundation Alliance, a coalition of more than 600 rare disease organizations that believe in the power of collective impact. The Elliot Lewis Center | TSF and The Elliot Lewis Center have a shared vision to enhance the lives of people with NMOSD by bringing local patients & caregivers together, and to promote research to ultimately find a cure for NMOSD. 13

INDUSTRY PARTNERS Alexion Pharmaceuticals | In June 2019, Alexion became the first pharmaceutical company to receive FDA approval of SOLIRIS® (Eculizumab) for the treatment of adults with neuromyelitis optica spectrum disorder (NMOSD) Viela Bio | Viela Bio is developing their lead product candidate, inebilizumab, as a first-line monotherapy treatment for patients with neuromyelitis optica spectrum disorder (NMOSD) Inebilizumab is a humanized monoclonal antibody designed to target and deplete CD19- expressing B cells. OTHER INITIATIVES Amazon Smile | In 2015, TSF became a participating charity in Amazon’s Smile program which donates 0.5% of eligible purchases to the foundation. Simply visit smile.amazon.com, choose “Sumaira Foundation” as your default charity, and start shopping! Charity Charge | 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. 14

TheSumairaFoundation thesumairafoundation TheSumairaFDN LET’S CONNECT The Sumaira Foundation The Sumaira Foundation www.sumairafoundation.org EMAIL GROUPS: MAILING ADDRESS: 15 [email protected] The Sumaira Foundation for NMO [email protected] P.O. Box 161 [email protected] Brookline, MA 02446 [email protected] [email protected]

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