Sumaira Flower

Sumaira Flower

December 25, 2014

How I Started a Foundation


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. (click to read the article)

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!

Please visit www.sumairafoundation.org and help illuminate the darkness of Neuromyelitis Optica. 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

December 18, 2014

Salon 10, Newbury Street





When I learned that I'm likely going to lose it all, I became completely devastated and immediately ran to Saks to buy myself a pair of Manolo Blahniks. Naturally, right? #typical - I'm such a girl.

***

This past weekend, I experienced what we call in my world a bit of a "relapse". Despite all the infusions, immunosuppressants & Satan's tic tacs I've been religiously force-feeding myself, my condition does not, under any circumstances, want to stabilize. 

This lead to a conversation about switching my chemo drug to something more powerful and hopefully effective, but not without side effects. The day I'd been having nightmares about since chemo started finally became a reality: I'm going to lose my hair. 

Like any other 25 year old female, I was overwhelmed with many feelings that I don't want to bore you with. However, after I bought my snazzy shoes and had time to absorb the new information, I decided this could be as fun as I make it - I could rock a different hairstyle with radical colors depending on my mood!



Through a friend, I learned about Salon 10 on Newbury Street. I scheduled a consultation with Patricia, the adorable owner with the most gentle demeanor, who has a stellar collection of wigs and routinely works with oncology patients. She is an expert on transitioning patients in and out of hair loss. I'd been dreading this appointment all week for fear that I'd have a mental breakdown but it actually turned out to be a really enjoyable experience. 

Patricia spent and hour and a half with me, taking the time to understand me, my needs, and what I'm comfortable with [and that my friends, would be edgy LOL] She was incredibly informative about styles, color, texture, care etc. She even let my friend try on some wigs for fun! Patricia has also founded a non-profit organization - Wigs for Well-Being which graciously donates wigs to those in need! http://www.wigsforwellbeing.org

I know when its time, things won't be easy but I'm so happy I met Patricia because I'm confident she's going to make one of the most challenging periods of my life as seamless as possible. I'm anticipating days when I'll really miss my hair, but ya know what, it'll grow back and in the interim, I'm going to enjoy sporting all kinds of looks!  Plus, I've heard your hair grows back even more beautifully - something to look forward to next year<3


PS.  I'm not afraid of going bald anymore - You'll find me decked out with an Alexander McQueen scarf delicately wrapped around my head, obnoxiously fab earrings and Ruby Woo lipstick. Ciao xx

**If you or anyone you know is suffering from hair loss due to imminent chemotherapy, please explore your options - there are many insurance plans that will cover a portion of the cost for wigs**


December 10, 2014

Boiling Down Happiness

This week, Earth lost an incredible woman but the heavens gained the most cheerful angel. I dedicate this post to Cheryl Venezia - a beautiful, effervescent, and most importantly, one of the happiest people who I feel lucky to have known and learned from

***


Between undergoing arduous treatments, starting a foundation, my sister's philanthropic trip to Tanzania, and now coping with the tragic death of a friend, these past few months have had me really thinking about what happiness actually equates to. 

My view on happiness has drastically changed. I used to believe my happiness had a direct correlation with how happening my social life was, my designer shoe collection, the number of admirers I had, etc. Gosh, in retrospect, I feel so silly for thinking this way but that's all I knew. Such is life - you live and learn.


Up until recently, I would feel pangs of physical pain in my chest when I'd come across pictures of myself before NMO - it was unbearable and torturous to see. I looked so happy, care-free, and naive; my smile was different then it is now. I'd see those pictures and feel self-pity because that Sumaira was clueless as to what was coming her way. For a long time, I wanted to go back in time and tell my old self to embrace every day because of the unimaginable I was about to face. I wanted to tell myself that I had it so good and to enjoy it because things would never be the same. 

June 29, 2014 - The last day before symptoms presented themselves

Today, I want to go back and tell myself that yes, your life is about to change, you're going to go endure some nightmarish times, things will be difficult, but you're about to board one helluva journey that's going to open doors and amazing opportunities, introduce you to incredible people, and teach you about life, happiness, and whats' truly important. 

I'm a happier person now than I was before I got sick. I'm happy to be alive, walking, and to have one good eye. I'm grateful for my support system who reinforce optimism and happiness. Being able to help others through my foundation brings me inexplicable joy. Jazz and chicken wings (especially together) take me to a very rosy place. Some would argue that it's too bad illness brought me to this outlook but I disagree. Ironically, I'm happy NMO has awakened me and allows me to see things for what they are!

I don't mean to preach but if there's any insight I can pass along it's to make happiness a priority. Live in the moment, be honest, don't waste time, be efficient, laugh hard, love passionately and try to make others feel good while you're at it.

I end this post asking you to take the time to think about 5 things that provide you with priceless happiness. I bet it won't be what your initial thoughts are... xx Flower