Hey, how are ya?
Wednesday, February 28th, was Rare Disease day across the country. I am one of those people with a rare disease. There are 15,000 people worldwide with Friedreich’s Ataxia – my sister and I being two of those statistics. The intention of Rare Disease Day is to raise awareness of all of the rare diseases out there. Having a rare disease can make you feel alone. Surprisingly though, after seeing the positive effects of social media and meeting many others affected by FA as well, my sister and I discovered that we are not alone.
For a while, it seemed as if we were the only ones who had at FA, but little did we know that there is a huge support group network of accomplished positive and strong people out there. The more I learn about people who also have FA, I become encouraged, excited, and motivated.
I would’ve never thought that I could create a blog, become a motivational speaker, write a book, continue my education if I didn’t know the stories of other dynamic people out there who live with — and thrive with — FA. In life, there are always pioneers who pave the way for us, and in honor of Rare Disease Day, I want to say thank you.
People like my sister Kaela, 28, who excelled in both undergraduate and graduate schools. She is now a licensed social worker. Kaela shows me the true meaning on how to never give up.
Kelly Barendt, 25, who writes the awesome blog called My Darling Life with FA is also one. She inspires m me to get my voice and thoughts out there with her captivating blog post’s that serve to so many people, not only with FA, but for everyone. Another individual is a motivational speaker, named Kyle Bryant, 36, who also has FA and serves as the director of FA’s largest philanthropy event, Ride Ataxia. He motivates me to focus on the bigger picture of life as well as being active in doing something to raise awareness, find a cure, and provide support to others.
The next individual is named Francesca Perazzola, 25, who serves as a columnist for Friedrich’s Ataxia News. She does a great job serving as the voice of many by explaining the wants and needs of many of people with FA through her posts. And thank you to Nick Carbone, 29, who is a lawyer and politician. He has proven to me that you truly can do anything you set your mind too while having FA.
Many people ask me where I get my positive attitude; even more, ask me how I keep it. Consider my secret sauce just spilled–people who I have been able to connect with, celebrate with and carry the torch for thanks to the community FA has fostered. Now I feel supported and invigorated to take my turn to become another FA force who serves others. These are four examples of the many amazing individuals who also have FA.