Posted by: The Sumaira Foundation in Nouvelles et annonces
It was mid-August. We were leaving Mass General Hospital. I’d been discharged after almost a week’s stay. I was just diagnosed with NMO. It was merely an acronym;the meaning hadn’t yet sunk in. I told my friend as we got into the car, “I’m not sure how yet, but somehow this has to become a good thing.” While in bed rest, I pondered for 2 weeks straight – “how do I spin my sickness into success?” Finally, it hit me – I’M STARTING A FOUNDATION.
I started by writing pitch letters to media outlets in Boston – the announcement of the organization needed to be on a solid platform. I decided to go with Boston Magazine. Within days, a journalist conducted a phone interview and a couple of weeks later, the article was published.
So now that we’ve essentially told the entire world about this, it was time to get to work. I hired an attorney. Filed the Articles of Incorporation; became a 501(c)(3). Crafted bylaws. Obtained a PO Box. Designed a logo. Formulated a mission statement. Created social media accounts. Ordered stationary. Set up a bank account and PayPal for non-profits. Developed a website. Formed a board/committee. And as of last week, became recognized by the IRS as a public charity. Phew!
After much deliberation, thought, and gleaning of input, we’ve narrowed down what The Sumaira Foundation is about:
1. Awareness – One of the main priorities is to generate global awareness about Neuromyelitis Optica. This initiative will be achieved through fundraising events, social media, press coverage, sharing patient stories etc. Awareness efforts will not just be limited to the general public but also to medical practitioners. A percentage of funds donated will be allocated to develop programs for medical professionals (i.e how to diagnose and counsel a patient, manage the illness, standardize a process from symptoms to treatment if possible) We hope to create educational materials for both patients and physicians that are easily accessible in doctor’s offices, hospitals, and online.
2. Patient Support – I never felt as alone as I did then when I first got sick. I wanted to talk to people – anyone. I had questions that no one around me really knew how to answer. Then, I found the NMO group on Facebook which I’ve been so grateful to discover. Inspired by the forum, there’s been a section on the site “Community” designated for patients/families/friends to discuss various topics related to the disease. The foundation aims to host a quarterly Q&A with a specialist online open to patients. And currently, we’re working on recruiting a mental health specialist to the team to answer questions through the site as needed! Between side effects of medications and dealing with the disease itself, things can get pretty heavy so having someone you know you can talk to, may be helpful!
Please bear in mind, while some progress has been made in a short period of time, we’re still very much in our infancy. I don’t expect this to become an overnight success nor do I want it to be. We’ve all heard the cliche – Rome wasn’t built overnight. Slowly, diligently, but surely, I’m confident that we’re going to start a movement in the right direction. Knowledge is power and with every person who learns about NMO, we’ve gotten one step closer towards achievement.
Though I hit this unexpected “roadblock”, The Sumaira Foundation was the greatest gift I could have received. It was definitely a much bigger undertaking then I’d originally anticipated, but it’s been nothing but a fulfilling journey. I went into this blindly (no pun intended!) and am learning every day. Perhaps this is the universe’s way of explaining why this all happened – maybe I’m supposed to be the person who helps educate everyone about this rare disease. I would have never been able to do this myself – thank you to everyone who has helped me thus far – there are so many altruistic folks out there!
There aren’t many of us, but we too need attention and support. Happy holidays – wish you all lots of love, laughter, and happiness! xx
