Today we’d like to introduce you to Sumaira Ahmed.
So, before we jump into specific questions about the business, why don’t you give us some details about you and your story.
I am 28 years old and live in Brookline. I started The Sumaira Foundation for NMO in October 2014 just a couple of months after getting diagnosed with NMO. Neuromyelitis Optica (NMO) is a rare autoimmune disease affecting the optic nerves and spinal cord leaving patients blind and/or paralyzed. There is no cure and the cause is unknown. 10 out of 1 million people have NMO and 35% of patients are misdiagnosed with Multiple Sclerosis. Treatments include steroids, chemotherapy, plasma exchange, and immunosuppressive therapy. I have permanently lost 60% of vision in my right eye and 25% in my left eye. I am a high-functioning, well-medicated (and heavily) patient.
Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
Luckily, it has not just been a smooth road but also a very enjoyable road. The foundation has grown quite a bit since its beginning days and I believe it has also helped me grow as a person and a leader.
Please tell us about The Sumaira Foundation for NMO.
The foundation focuses on raising awareness, fundraising for research & development, and supporting the community. What started with just myself and my attorney has transformed into 16-member board with very impressive people on the team. Besides TSF for NMO, there is one other major foundation in the world for NMO, Guthy-Jackson Charitable Foundation. They focus mostly on R&D and patient advocacy.
Our most successful way of raising awareness has been through our Voices of NMO program. It is a story-sharing hub with perspectives from patients, family members, clinicians, etc. It has served as an effective tool and we are actually turning it into a podcast this fall!
Our foundation is event-centric; being the visionary of the organization, I love a good party! We’ve been lucky to work with some incredible companies to help support our mission including BCBG Max Azria, LinkedIn, Tesla, Partners Healthcare, Jo Malone, Shake Shack, Boston Laser, 90+ Cellars to name a few. We host an annual gala in March which is where most of our funding is generated. We recently hosted our 1st community event, NMO Picnic in the Park, at the Boston Common for children and young adults suffering from NMO.
Projects in the pipeline include the Voices of NMO podcast, we are launching merchandise this fall, hosting an NMO round table in NYC in January 2018, an annual run in summer 2018, and of course, planning for the gala in March (it’s going to be Bollywood-themed!)
If you had to go back in time and start over, would you have done anything differently?
- Address: PO Box 161
Brookline, MA 02446
- Website: www.sumairafoundation.org
- Email: firstname.lastname@example.org
- Instagram: http://instagram.com/thesumairafoundation
- Facebook: https://www.facebook.com/TheSumairaFoundation/
- Twitter: https://twitter.com/TheSumairaFDN
Studio B Photography, Osakpolo Igiede, Sourav Chatterjee