Cheers To 40 Years!!

This is 40! You guys WE did it!!! 

Cheers to 40 years!! 

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I celebrated my 40th birthday over a month ago and I think I’ll just keep celebrating all year long!! 40!! I can’t stop saying it!! I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been SO worth it!! I just keep saying it over and over again. I am 40!!! It’s hard to believe!! I know what a privilege it is... I’m beyond grateful! ⁣

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More than half the CF population is over 18 now which is so incredible. However, the reality is only 15% of the CF population is over the age of 40. This statistic hits a lil to close to home, it’s very sobering to me, and frankly it scares the crap out of me... 15% is NOT ok. A cure is so close, but we just aren't there yet! That is why raising awareness is so important to me. We can’t keep losing people to this disease. ⁣

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I am truly grateful for every single breath I breathe. Hitting these milestones is so special to me, I know growing older is a privilege denied by way too many. Each year it is an honor to turn another year older and in some way I hope that I am honoring ALL the friends I have lost to CF. It really does take a village to live this CF life and I couldn’t be more thankful for all of you! 

Thank you from the bottom of my heart. I am happily grateful for it ALL!! Cheers to 40 AMAZING years!! 🎉 Breathe out Love! Xo❤️⁣

Five Feet Apart

Just a reminder Five Feet Apart comes out this Friday, March 15!! Go see it!! 

There have been so many different discussions and opinions regarding this movie in the CF community. Whatever feelings you have towards this movie I hope you will at least see it, and when you do I hope it will help alleviate your fears and concerns and you will see how eye opening and well done it truly is. 

I have had the opportunity to see this movie twice now, once last month and again this week, both times the audiences were moved to laughter and tears. I thought FFA was incredibly done and very relatable! Last month I went with my parents and having them both tearing up next to me was an indescribable experience. I try to protect them from CF as much as I can but the truth is this is our reality. I don’t let too many people see the hard parts of CF, I guess my mindset is to always protect and be strong for everyone, I’m not too sure why I do this because it can be exhausting... I feel like it’s just the CF way, because I know I’m not the only one. There are some real, raw moments in this film and having my support system see it with me was a vulnerable feeling but at the same time it was liberating in a way to have them see the emotions I experience and all that takes place behind the scenes. 

As the cast was introduced to us and as they took on life with CF head on as so many of us with CF do I couldn’t help but feel Claire’s presence throughout the film. CF is different for everyone and although not everyone will relate to these stories that were portrayed so well I truly believe we will see a lil bit of ourselves within each character. Human connection is so important and when you live with a disease that prevents you from connecting with the very people that get what you’re going through having more people become aware and understand your world even if it’s just for two hours means more than you know. 

This film is bringing awareness to the forefront of a disease that so many people still don’t even know what it is, it’s going to be so eye opening for people. I truly believe it will help others have a greater understanding and new perspective not just of the CF community but the chronic illness community as a whole. There is so much more to CF than what you will see in this movie but this will get the conversations started and from there we can continue to educate and spread CF awareness. 

It’s pretty amazing to me that CF is changing before our very eyes with all these amazing modulators and the drugs that are in the pipeline. I believe CF as I know it and CF that is depicted in this film will soon be a distant memory and not the reality for the children that are diagnosed today, and that is worth celebrating! Breathe out Love! Xo❤️

Nobody Fights Alone

There are approximately 70,000 children and young adults like myself world wide that have CF. We fight day in and day out to stay as healthy as possible, our fight makes us strong!

“Maybe life isn't about avoiding the bruises. Maybe it's about collecting the scars to prove you showed up for it."

I believe life is what you make it. So make sure you keep showing up for it time and time again. Don’t give up, get back up and keep trying! Life can be frustrating whether you have CF or not, we all have struggles. So show up, collect your scars and continue to give hope to others. Show them that if you can do it so can they, you just never know who will be watching. We are all fighters in our own way. Some of us just have to fight a lil bit harder. One thing I know for certain is we are all in this fight together...Nobody fights alone! Keep fighting! Breathe out Love! Xo❤️

HUGE NEWS!! 47 and Counting!!

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and I joined the fight. 

This past weekend at NACFC the median age of survival for CF was raised to 47. This is huge news!! I have seen some mixed reviews about this in the community. I have seen both positive and negative thoughts on this and a lot of misguided information. I think more information and data from the CFF would be welcomed by both sides. 

What does raising the median age of survival mean exactly.... well it doesn't mean we all automatically live to 47 and that's it. Yes I have seen this out there. 

I for one see it as a positive and amazing stride in getting us closer to a cure. Raising the median age of survival means to me that... 

1. My lil CF kiddos have a real opportunity to live longer lives!! 

2. Newly diagnosed children of today and the future are going to have even longer lives than us diagnosed in the 70s and 80s. 

3. These parents of newly diagnosed children are going to have such a better story to tell than my parents. Their experience will still be devastating to hear but not so negative and grim.  

4. This means that these drugs and medical advancements that we all work so hard for are working and it means there are options out there. When I was diagnosed there were no drugs available. We have come so far!!! 

5. It means all our hard work and time as an older generation of CF patients and loved ones spreading awareness, participating in drug trials, and fundraising is not being wasted. 

This huge news is more of a positive win for the younger generation and I for one am completely ok with that. It's why I do what I do! 

Some of my fears that I have with this huge news is... The CFF needs to stress it's the MEDIAN age of survival. I would hate for the increase in age to deter donations. We are still losing children and young adults to CF and the momentum of fundraising, research, and clinical trials CANNOT slow down! 

There will still be so many children and young adults that do not make it to 47 having a number like that can set up people's mind for failure and that scares me. 

My whole life or when I could truly grasp the fact about CF and what that meant I knew the median age of survival was 37. When I turned 37 a year and a half ago it was such a surreal feeling. I almost felt like a huge weight in some way was lifted off my shoulders. I remember thinking to myself ok. I did it!! 

I can't help but think now that I am in for another giant fight to get to 47.. I like to have goals and I like to surpass those goals but I also need to be realistic. Having unrealistic goals is stressful for anyone. Trust me I would love to live to 90 but again I don't want to set myself up for failure. Don't get me wrong I'm ready to fight and fight so hard. 

I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! Numbers or statistics should never define us, I feel we are constantly proving that ever day. All we truly know is that this very moment is all we have, and that's what we need to focus on! I know that nothing is worth more than this day, right here.... right now. Fighting CF takes a village, I couldn't be more grateful for my village that has helped me get to this very moment in life, and that is also worth celebrating in my book! Breathe out Love! Xo❤️

38 Donate!

38 Donate!! May is Cystic Fibrosis Month and it just so happens to be my bday month.... I don't think this is a coincidence. 

It's an exciting time in the CF community more than half the CF population is over 18 now which is unbelievably amazing, but sadly only 15% of the CF population is over the age of 40. Turning 38 that statistic hits a lil to close to home and is very sobering to me, in fact this number is not ok. 

A cure is close, but we aren't there yet! Please join me as my theme for my bday this year is 38 Donate!! I have set up a special link to take donations that will go directly to the CF Foundation and help fund research to find that sought after cure. Because let's be honest that is the best birthday gift I could ever hope for. 

https://tribute.tributecff.org/somerlove38

As I celebrate my 38th birthday I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been worth it!! I am filled with more hope than ever, and truly believe with my whole heart that a cure is close. 

Thank you for making my bday so special by making a bday donation in my honor and helping all of us with CF keep celebrating these milestones. I dream of the day I can celebrate my 40th bday and I will have ALL of you to thank for that. 
Breathe out Love! Xo❤️

Love To Breathe Award 2017

I had the honor of presenting the Love To Breathe Award at the annual Adding Tomorrows meeting. The Love To Breathe Award was established in 2007 making this year the 10th anniversary which was pretty incredible. 

The award is given to:
•someone who is passionate about Cystic Fibrosis
•someone who is out in the community raising awareness and making a difference
•someone who is known in the CF community
•someone who has the ultimate goal to make CF stand for CURE FOUND

This years Love To Breathe Award recipient was Kathleen Richards!! She lives and breathes all these qualifications. To know her is to love her. I had the pleasure of presenting with her at NACFC this last November about mentoring, little did she know she's always been a mentor to me. 

I first met Kathleen when I was 12, she has put up with me for so many years not to mention my teenage years that alone deserves an award. She has taught me all my airway clearance techniques and was the reason I came up with my own technique which I call "Somer Genics" She loves mucus and to this day she still gets so excited when I call the mucus hotline. I'm so honored and lucky to have her as a friend. 

Kathleen thank you for all you did for me and for all you do for my lil CF kiddos. You have taught us all how to breathe deep, BLAST it out, and to always keep on going! Taking this pic with these cardboard heroes seemed fitting since you're a real life hero to so many!! This award was long overdue and so well deserved. Breathe out Love! Xo❤

Surviving Is My Reality

"And so she breathed through her life as if it were a battlefield and wished that one day she would actually live, and not just survive."


This quote is so fitting. CF is my battlefield I will tell you that surviving this battlefield is no easy feat! Today my CF apt was loooonnnggg and a lil bit draining to say the least. My mind is always on overload after appointments like today. I truly am in awe and so very grateful for this body of mine, it seriously amazes me everyday at how hard it works just to survive. 

My lungs are on a slow but steady decline. Seeing loss in lung function and facing the reality of what percentage of lung power I have left can be somewhat discouraging. However, I try not to focus on the numbers too much... it's easier said than done, but the mind can be a powerful healing tool. I have one month to turn these numbers around or I'll be joint bound. Until then I will continue to breathe through my battlefield and do everything in my power to survive because surviving is my reality and I have to be ok with that. 
Breathe out Love! Xo❤

Madonna!!

It is so great to see so many amazing people and celebrities support the Cystic Fibrosis Foundation with the #TakeABreathForCF campaign to raise funds and awareness for CF!! Of course there is only ONE celebrity that makes my world go round..... the ONE and ONLY Madonna. Madonna make my birthday one to remember and Take a Breath for CF! 

I sent Madonna this video back in 2015 when she did a question and answer on Instagram. 

https://instagram.com/p/BF7SMvJnAm7/

I had 15 sec or less to record this video and ask her anything....So much pressure!!!  So, naturally I asked her something I think is very important and near and dear to my heart. She didn't answer my question.... maybe because there were thousands of other videos to scroll through. Perhaps maybe she even skipped it because the answer is more than likely yes, or maybe because it's something most people don't even really think twice about since it usually comes with such ease. But if you really truly think about each and every breath you take, I promise you, you will treat each breath as a gift... and you will Love to Breathe®. 

May is Cystic Fibrosis Month and it just so happens to be my bday month....I can't believe I am 37, May really is A•MAY•ZING!! 

So for the rest of this month I challenge you to really think about every breath you take... What would your answer to my question be? I mean, I know it would probably be yes... but if you really think about it, I'm pretty sure it's more than just a yes or no question. So if you have a chance you also should #TakeABreathForCF and support the CF Foundation and of course as always... Breathe out Love! Xo❤️