Rudy here... I'm very pleased to announce that Shira Strongin has officially joined the AIways in Hope team and she'd like to tell you in her own words:
Hi my name is Shira aka “Sick Chick”. I’m an Orange County girl with an urban attitude. I live with my parents and my two rescue shepherds. My passions include binging Netlflix, lobbying the House and Senate, hanging out with friends, reading, writing, and all things social justice.
Novelist John Green wrote, “The way I figure it, everyone gets a miracle.” Depending how you define the word miracle I think getting sick was mine. No, I’m not happy I got sick, but I wouldn’t be the person I am today if I hadn’t. Because of having a rare disease I know how strong I am. I’ve realized my passion for advocacy. I’ve realized how to appreciate the little things like being able to stand up, or breathe, or even get older. I can laugh in basically any situation now. I’ve learned not let something as uncontrollable as pain get in the way of living.
As one of my favorite poets Sylvia Plath once said, “…everything in life is writeable about if you have the outgoing guts to do it, and the imagination to improvise…” That quote inspired me to start blogging under the pen name Sick Chick. (As the name implies I seem to have won the genetic lottery in acquiring rare diseases.) To me, there is nothing more beautiful and powerful than the written word. It has provided me the ability to give a voice to many issues and experiences that shouldn’t be normal in a teen’s life. My blog eventually turned into The Sick Chick Network. Through my website and Facebook support group, The Sick Chick Network combines my passions for ableism and feminist advocacy, as well as writing. I’ve gotten to be a part of a wonderful community through that and support young women who, like me, refuse to let their disease define them. I invite you all to visit the website www.thesickchicks.com, we are a powerful group of young women wanting to make a change.
Speaking of making a change, I’m thrilled to be joining the Always in Hope project as an Associate Producer. I believe media is such a force in awareness. And while The Beatles might sing, “all you need is love”, I believe all you need is hope especially while living with a rare disease. I don’t know how much I believe in fate, but if our faulty stars (or for some of us our faulty genetics) determine what happens to us, we still have the power to choose how we handle it and what we do with it. I’m taking a stand and speaking up. I’m hoping you’ll join me.
My 17th birthday is coming up (March 29th) and my birthday wish this year is for donations to the Always in Hope Kickstarter to support continual hope. Not just for me, but for all of us in the rare disease community. No amount is too small, we truly appreciate everything.
I’d like to end with one last quote with a word on advocacy. This is from one of my favorite doctors (and gosh knows I have many), Dr. Seuss, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” Without your support this project can’t happen. We need everyone to stand together for the rare disease community, because despite all of the challenges we face we’re not giving up. We’re Always in Hope.