“Something Special”

Standard

“If you laugh, you think, and you cry, that’s a full day.  That’s a heck of a day.  You do that seven days a week, you’re going to have something special.”

— Jimmy Valvano

 

It’s safe to say that the late Jimmy Valvano would agree with me when I say my Miss New York week was “something special.” I laughed. I thought. I cried. Every day.

Three things my fellow contestants learned about me this past week:

  1. Coffee is of the utmost importance to me.
  2. My tear ducts could flood the Sahara.
  3. I love a good selfie.

Suffice it to say, I am an incredibly emotional and sentimental person…throw me in a hotel with 20 other incredible young women for a week and all bets are off. Rest assured these were never tears of sadness. It is an overwhelmingly exciting, fulfilling and exhausting week! One night at dinner, Kira Kazantsev (your Miss New York 2014 – excuse the name-dropping!) and I went from laughing hysterically, to crying (Thanks, Celine Dion), to laughing again.  Okay, as I type that we sound a little crazy, and maybe we are. Bottom line is, competing in the Miss America Organization is a bonding experience like no other.

Yes, all of us are actually supportive and friendly backstage. One moment in particular that I won’t forget: I was on the verge of a wardrobe malfunction backstage just MOMENTS before I needed to perform my talent after making the Top Ten.  Without any hesitation, Miss Syracuse, Adrienne Wilson, came to my rescue and helped make sure I was able to get onstage and sing at the top of my lungs. (Sorry, had to!)

One of my favorite photos from this weekend was the #OscarSelfie I was adamant that the Top Ten take after our official photo had been taken.

Image

Image

I think it is evident that we all had the time of our lives! Every single contestant made Miss New York Week 2014, “something special.”

The Jimmy Valvano quote above comes from his speech at the 1993 ESPY Awards. This is an 11 minute video that will change your life and how you lead it.  I find myself turning back to it so often. So I’ll leave you with a few other wise words from Jimmy V that I live by:

“Don’t Give Up. Don’t Ever Give Up.”

 

 

Advertisements

Meaningful May

Standard

May is Cystic Fibrosis Awareness month.

May is for Miracles. (Children’s Miracle Network)

May is Miss New York month.

So, you may be hearing from me a lot throughout the next 31 days 😉

I was able to get a head-start on this Meaningful May on Wednesday when I went to New Brunswick, NJ to visit the cystic fibrosis clinic at Robert Wood Johnson University Hospital and its neighbor Children’s Specialized Hospital, a Children’s Miracle Network Hospital.

Image

Presenting Dr. Thomas Scanlin with a $3000 donation from Singing at the Top of My Lungs

Dr. Thomas Scanlin diagnosed me with cystic fibrosis (CF) before I was born. He has administered outstanding care for me over the past 21 years and I quite literally trust him with my life. So, I was absolutely thrilled to donate $3,000 from my foundation, Singing at the Top of My Lungs, to his CF clinic.  Dr. Scanlin expressed his appreciation for this donation which will help fund important research and clinical trials, as well as support families battling cystic fibrosis.  This donation would not have been possible without my foundation’s supporters and for you, I am forever grateful.

While I was in the neighborhood, I was able to stop by Children’s Specialized Hospital for an incredible tour with my friend Kaitlin Davis, their Children’s Miracle Network Program Manager.

Image

Touring Children’s Specialized with the lovely Kaitlin Davis 🙂

Children’s Specialized is our nation’s largest pediatric rehabilitation hospital with a typical patient stay lasting 3-6 weeks. I was so impressed with their commitment to family-centered care.  There are spacious family lounges with great views to give patients and their parents and siblings a change of scenery from their hospital room.  The floors have recreational rooms which are trauma-free and allow these young patients to escape their rehab therapies and just be kids. Children’s Specialized is a phenomenal representation of the quality of care given in our country’s Children’s Miracle Network Hospitals.

Last night, I hosted a Children’s Miracle Network fundraiser as Miss Metropolitan at Jasper’s Taphouse in Hell’s Kitchen.  With the help of my fabulous friends and several supportive strangers, I was able to kick-off “May is for Miracles” with a bang!

More coming your way very soon…

❤ Always

Julia Rae

Image

Cheers For the Kids! at Jasper’s Taphouse

Behind the Headshot

Standard

Julia Rae

Last week I posted my headshot for Miss New York 2014, which has inspired this: my first venture into the blogosphere! This photo is all thanks to the genius of photographer, Claire Buffie, and the fabulous hair & makeup artist, Lindsey Zelli. (Because unlike Beyoncé, I do not wake up “Flawless.”)

Behind the makeup, great lighting and windblown hair is the real reason I decided to step back on stage and into the world of pageantry.

I am competing for the title of Miss New York 2014 with the goal of living up to another title I have been given —

cystic fibrosis advocate.

I have been speaking to raise money and awareness for cystic fibrosis for 7 years.  But for 7 years I have felt like I have only been scratching the surface…standing behind a microphone at events across America while still trying to keep my CF under wraps in certain aspects.  To be completely honest, it is scary terrifying for me to share my personal battle with a chronic lung disease, something I was used to keeping very private for the first 16 years of my life.

Now, I am ready to conquer that fear and jump in.

I feel that it is my personal responsibility to my friends with cystic fibrosis that are fighting for their lives, waiting for or recovering from double lung transplants and for those that face the frustrations of daily breathing treatments and numerous pills with every meal.  I am able to speak up and raise my voice for those facing a tougher battle than me and I am ready to rise to the challenge.

I hope you’ll follow my blog as I share more about living with cystic fibrosis and my efforts to amplify awareness through my quest for the crown.