Hey! Longtime no write – am I right? Bad pun…won’t ever do that again. Anyway, sorry about that! Health stuff – don’t you just love it? So much has happened since my last blog post. I probably won’t be able to fit everything into one post, but I’m going to try.

So I went to the Global Genes 2015 Summit and Gala where I had the incredible honor of receiving the 2015 RARE Champion of Hope – Teen Advocate Award. It was such a special night and I will tell you all about it (promise), but first I’m going to back it up to the day before.

When I first found out I had received the award I met with Global Genes founder and CEO Nicole Boice. – Side note about Nicole; she is such a great ally to the rare disease community. We’re so lucky to have this kick ass woman on our side. She’s incredibly generous and so kind. – While we were talking I shared with her my desire for there to be a way to bring all of the great youth advocates I’ve met on my “journey” (ugh I hate that word, but when it works, it works) together to make some positive change. As youths we are our own best advocates, we know our bodies, so it’s our job to speak up – shout if we have to. Nicole wanted to help in any way possible and suggested we have this meeting during the Summit. Nicole put me in touch with other awesome fighters on the Global Genes team – big shout out to Carrie and Kym for all of the hard work they put into this event – and we made this conference a reality.

A group of nine young adults met including myself, we even had two Skype in, to form We Are More. And if I tell you all about We Are More I will need a “Part 1” and “Part 2”, maybe even a “Part 3”, for this post, but I will be putting a spotlight up about it in the next day or two. I will tell you some basics so you can understand how cool this meeting was! We had multiple disease representation, it was inspiring to see how passionate everyone was about advocacy – it refueled some of my own fire.

I’d like to spend some time talking about one specific person there. Madi Vanstone. Madi is the 2015 RARE Champion of Hope – International Teen Advocate. She’s also my sister. Madi and I bonded over our obsession with reality TV – quick poll who thinks Brooks from “Real Housewives of Orange County” actually has cancer? – I’m so excited to get to continue working with her on We Are More. I also see some trips to Canada for horse back riding in my future and some trips to the OC for surfing in Madi’s.  

Now onto Saturday night’s Gala! So much to talk about. Seriously. So. Much. The night started off with Madi and I walking the Blue Carpet together. That was so intimidating, but also super cool. Then we hung out in the cocktail hour for a while before going into the room where the gala was being held. It was absolutely gorgeous. I’m super happy because my parents came (obviously), along with two very close friends of mine, two of my medical world older sisters/children…it’s a long story, family friends who have known me since I was in diapers, and even my doctor came to support me.

Cimorelli kicked off the night with an awesome performance, I suggest you go check it out – Global Genes uploaded a video of it. The girls are so sweet!! I actually loved their performance and meeting them so much that my friend and I got tickets to their show in Santa Ana a couple of days after the Gala. Definitely go like their Facebook page and follow their Twitter/Instagram @Cimorelliband

Shortly into the Gala it was my turn to be presented with my award. I was taken back stage where I met Pretty Little Liars and Ned’s Declassified School Survival Guide actress Lindsey Shaw who presented my award. She gave me the biggest hug! Well, hugs…there were multiple of them. Lindsey talked to me a lot before going on to present my award. She was so nice and it was so weird to see her in awe of me. When she introduced me there were a lot of unforgettable moments, but the most unforgettable for me was when she called me a badass “I mean, WTF man”. I gave my acceptance speech, but I was totally freaking out that I would drop the award the entire time. I’m just kind of a klutz…

Global Genes uploaded videos from the Gala and if you want you can see my speech and Lindsey’s introduction! 

I’m not going to recount the entire night for you, but I am going to go through a few stand out moments. Such as Ben Lou’s, well everything. Ben Lou has Spinal Muscular Atrophy (SMA) and he won the U.S. Junior Team’s only gold medal in the 2014 World Math Team Championships (WMTC) when he was 11 – I’m seriously thinking of reaching out to him for math help, and I’m a junior in high school. He went to China for the WMTC, and while he was there he advocated for disability rights. Like me Ben is made of titanium – screwed up for life! After receiving his award Ben sang “Titanium” with American Idol winner, Kris Allen. I don’t think there was a dry eye in the audience. Go follow Ben’s Instagram account: team.ben_ for more on Ben

I also got to meet Travis Flores, a super cool philanthropist, actor, and writer who has Cystic Fibrosis and recently underwent a double lung transplant. Follow him on Instagram/Twitter @travisflores, and like his Facebook page! He’s a great advocate for rare disease and an example of not letting his disease define him. I’m looking forward to working with him more in the future.

Finally towards the end of the night I met a woman who reminded me of the reason why I started the Sick Chick network. Caterina told me about her five-year-old daughter with FEVR disease. She explained that Cailee (her daughter) is currently considered low vision as well as has amblyopia (as well as multiple issues) which makes her eyes turn out. She told me about Cailee’s spunky personality and her warrior attitude. Here’s a quote from Cailee’s awesome fighter mom Caterina that had me tearing up when I read it later. I was so touched, “Shira understands the need for girls like my daughter to grow up with and have a positive self image and believe in advocating for yourself. I thanked her and told her that she without a doubt is a great example of what Cailee says is a "Tough Girl"....”

This is why I started the Sick Chick network. I want girls with illnesses and disabilities to grow up knowing how beautiful they are. I want them to grow up knowing how tough they are. I want them to grow up knowing they don’t need to be saved.

Maybe it’s a good thing there is no Disney Princess like us, because they really aren’t great role models. We need body positive role models who teach young girls to advocate for themselves. We need Sick Chicks.

Follow Cailee by friend-ing Cailee’s Corner on Facebook and like VisionQuest 20/20 on Facebook.

I can’t wait to see where this journey (that word again…) takes me. I’m so excited that you’re all here with me for it.


Sick Chick

You can follow me on Twitter @sick_chicks and Instagram @shirastrongin