Ever since I was a little girl, I’ve always been extremely passionate about raising awareness and funds for my disease, Spinal Muscular Atrophy. It started off with lemonade stands in the neighborhood with my friends, where I would dream about raising $100 for my cause. Then, with the advice and motivation from a friend, I started branching out and designing greeting cards and calendars at the age of ten. It was then that I realized how passionate I was about philanthropy, and the rest pretty much became history.
From there, $5 turned into $100, $100 turned into $1,000, and now I can proudly say I’ve raised around $78,000 for Spinal Muscular Atrophy research. Between the sale of my card and calendar designs and organizing annual fundraisers, I can proudly say this is my biggest accomplishment to date. However, with the innate drive to keep outdoing my previous goals, I’m always looking for different and new ways to bring awareness to this cause. Hence why I began this blog, and also why I’ve done various side projects like the videos on my life and SMA. There’s nothing more rewarding than knowing your hard work is going to help others. So, when I see an opportunity, I’m going to take it.
Earlier this summer, I took a chance and wrote a letter to a state official that I had briefly met one night while out to dinner. I explained my efforts towards SMA, and asked if it were at all possible to get the Rhode Island Statehouse dome lit in the month of August. August is National SMA Awareness Month, and I couldn’t think of a more perfect time to make this happen. To my surprise, he promptly responded to my letter, and gave just the answer I was looking for…YES! Above all else, I wanted the Statehouse to be lit green because green represents the color of hope, and I believe hope is the leading force that keeps the SMA community moving forward.
In recent years, scientists have begun to make major breakthroughs in Spinal Muscular Atrophy research. It’s unbelievable to think that just twenty years ago, no one had ever really heard of SMA. Little was known about the disease, and doctors were only giving parents what they didn’t want to hear: that nothing was being done to find a cure. Now, here we are, more hopeful than ever for what is ahead. Clinical trials are taking place in different parts of the world, and doctors can finally give parents good news by providing encouragement and optimism. By continuing to push through adversity and advocate for a cause we so passionately believe in, hope just may become a reality in the years to come.
Here in Rhode Island, if you take a drive on I-95 through Providence, you’ll notice our majestic Statehouse right in downtown. And, at different times in the year, you’ll also notice that its dome may be lit a certain color to represent different causes like breast cancer and pancreatic cancer. It’s a great concept, because it makes people wonder why it’s lit, which then ultimately raises awareness. Purposely or not, the Statehouse was built in the perfect spot for any passerby on the highway to catch a quick glimpse of its architectural beauty, and the light that’s glowing on top.
The Statehouse dome lighting began on August 2nd, and will continue to stay lit through August 12th. Being the fortunate girl that I am, I had some great friends and family by my side to watch as the dome gradually began to shine green. I also had the pleasure of sharing the night with a local news station, WPRI Channel 12, that will be airing a segment about it in the near future. That night was more than perfect, and I am forever grateful for those who made it possible including Governor Lincoln Chafee and the Director of the Department of Administration, Mr. Richard Licht.
To anyone and everyone who sees the Statehouse lit, whether you’re driving through the city or taking a stroll through downtown, I hope you remember what the Statehouse represents as it’s lit green. Even if you have never heard of Spinal Muscular Atrophy before, I hope it reminds you to never actually lose sight of hope. After all, hope is what holds us together. It keeps us moving forward knowing that there’s something better and greater for our future.