It’s okay to be selfish

I am back to blogging and I’m pretty excited about it!

I decided to join Team Boomer and run the Rutgers Unite Half Marathon on April 17th to raise money and awareness for cystic fibrosis through the Boomer Esiason Foundation. I know you have heard the “every dollar counts” thing a million times…and that’s because it’s true. So, check out my fundraising page! I challenge you to skip that Starbucks latte for a day and donate $5: http://www.firstgiving.com/fundraiser/julia-rae/2016-nj-half-marathon-at-rutgers-university

Truth be told, I have never been a big fan of running. So…why am I doing this?!

I ask myself the same thing every time I look at my weekly training schedule.

As much as I am running to help fund research to change the quality of the lives of CF fighters…

As much as I am running to one day celebrate a cure found…

As much as I am running for those CF patients that face a tougher battle…

I am also running this race for me.

Selfish as that may sound…

I am doing it for those “why me” days.

One of those days…(my mom was super proud she braided my hair, but for once in my life, I did not want my photo taken)

Those days when I look at my friends wishing that, like them, I didn’t have to figure out how to fit in breathing treatments before going out

Those days when I just crave to know what it is like to not have to battle this chronic illness

I could go on…but this is not a pity blog, or a place where I want to foster negativity.

But those “why me” days are real and training for this half marathon makes me feel like I’m putting those days in their place — which is few and far between the days that I wake up feeling grateful and ready to hit the ground running (I heart puns!) to achieve my biggest goals.

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Partnering with Novartis!

I’m partnering with Novartis to share lessons I’ve learned from living with my condition on their Facebook page: on.fb.me/1rdzLA1. To learn how I cope, what inspires me and keeps me going, “like” their page and follow my posts. Would love to hear your dreams and what inspires you!

(I am being compensated by Novartis as part of this partnership. The opinions and content shared through this program are my own.) 🙂

Still have stairs to climb

Thank you all so much for sharing the New York Daily News article!! The stair climb at Citi Field was a great success — it was incredible to see over 200 participants for the first climb! That is all thanks to the hard work of the wonderful people at the Cystic Fibrosis Foundation Greater New York Chapter and their dedicated volunteers.

Thanks to events like the climb and the generous supporters who donate their time, money and energy to finding a cure for cystic fibrosis, we have made major strides in the fight against CF. The lifespan has doubled over the past 30 years and equally as important, the quality of life of patients has improved. Yesterday, the Cystic Fibrosis Foundation received $3.3 billion from selling drug royalties. (You can read the CFF’s release here and the NY Times article here.) The trailblazing efforts of the CF Foundation resulted in this remarkable return on smart investments in cystic fibrosis research.

That number is huge and exciting. But, this is not the time to take a backseat on fundraising or donating. On Sunday at Citi Field, I met a girl my age climbing for her best friend who passed away in June from cystic fibrosis. We are still losing too many, far too young to this disease.

That’s why I speak out. Being so public about a very personal battle is a constant struggle for me. There are days when I want to close all the doors I have opened and quietly fight this. But I do it because I am able. I can, so I should. I owe it to the many patients waiting for their second double lung transplant, to those who were never able to realize their biggest dreams, to the young families that have to learn what cystic fibrosis is and how to face it.

So, while I hope this news can be celebrated, I hope you all will continue to join me in supporting the innovative efforts of the Cystic Fibrosis Foundation.

Meaningful May

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.

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.

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

Cheers For the Kids! at Jasper’s Taphouse

No Breaks.

I finally have a chance to sit down and write again thanks to Easter Break. It is really nice to come back to my family’s home and temporarily leave the stress of school work behind.

Everyone needs a break.

I feel for my friends in the workplace who no longer have this time off…Spring Breaks, Holiday Breaks and best of all, Summer. (Makes me want to stay in school forever!! Dont worry, Dad…I won’t!)  😀

But, as I was packing, I realized there is one stressful aspect of my life I can’t take a break from: cystic fibrosis.

The daily regimen (See video below) to keep my lungs healthy is all I have ever known. Waking up and doing a nebulizer and vest treatment is as much a part of my morning routine as brushing my teeth. Every single day of the past 21 years of my life I have done up to 2 hours of treatments to make breathing a little easier.

 

This is my friend IV (pronounced Ivy) He is a 2 1/2 year old CF fighter and the next picture is his daily routine. IV has to take pills with every single meal to make sure he is absorbing all the nutrients from his food, all because of the havoc cystic fibrosis wreaks on his pancreas. Some CF patients take up to 60 pills a day.

Every day.

No Breaks.

Trust me, I have tried to take some time off from cystic fibrosis. For the first time in my life, I became quite lackadaisical with my daily routine when I moved to NYC in the Fall. I landed myself in the hospital for 2 weeks.  I learned my lesson.

No

Breaks.

That’s why this preventive care is so important.  That’s why research is so important. That’s why people like you who support cystic fibrosis research are so important. Research is not only “adding tomorrows” for cystic fibrosis patients. It is adding quality to our todays. So maybe someday, IV and I can take a break and

just breathe…

Behind the Headshot

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.