Anna’s Amazing Race – More Info

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Annie has her sneakers laced up and is ready for the Amazing Race on October 3rd! We hope you are too! Thank you to everyone who has signed up their teams and made donations so far. Here are some links for those who haven’t:

Race website which will easily direct you everywhere: Annasamazingrace.com

Sign up or join a team here.

Donate to the race or to a team here.

Volunteering: email me at kmmusso@gmail.com

We also have an exciting way to donate and raise awareness which is ordering a sweatshirt through our booster campaign: http://www.booster.com/annas-amazing-race

We’re working on the clues and routes for all the teams so please get your teams signed up as soon as you can!

Thank you, thank you, thank you! We are looking forward to seeing everyone in (less than!) two weeks!!

Let’s Talk about CF

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Hello friends! As you all know our annual fundraiser is approaching and I thought this was a great time to blog about some things you may not know about CF and our daily lives.

Cystic fibrosis is an illness caused by a teeny tiny genetic mutation that causes a whole lot of problems. The mutation is a recessive gene so when both parents are carriers there is a 25% chance of their child having CF. There are no symptoms to being a carrier and you may be surprised that 1 in 20 people in the US are carriers and don’t know. The mutation in her genetic code causes her mucus to be thick and sticky. Mucus is present more places that one might think and helps your body in a lot of ways, unless it is thick, sticky mucus. Mucus lines the digestive track, is present in the lungs, and is present in the sinuses. Some of the problems that this causes are frequent lung infections, frequent sinus infections and sinus problems, and she is unable to digest food without enzymes taken orally with every meal. Anna also has some vitamin deficiencies because of malabsorbtion and she releases much more salt in her sweat that is not absorbed like most people. To remedy these issues Anna takes vitamins daily and has to stay extra hydrated. She still gives super salty kisses in the summer time but I love them :) Sometimes you can even see the salt crystallized on her skin and in her hair, it’s kind of crazy! We just make sure she’s always got a drink around and are very aware when she’s in a more risky environment. She has to take breaks from the sun and running around getting too sweaty but we don’t let it stop her too much, and at the beach we pack lots of gatorade!

Some other issues that come along with her not being able to fully digest are a lot of trips to the bathroom and stomach pain. We always have to be aware and make sure she isn’t experiencing any blockages in her intestine and she drinks miralax every other day and takes medicine to help with indigestion and gas.

Overall, Anna takes about 25 pills a day, 4 droppers of medicine, an antacid, and a vitamin. Those are the easy parts! She spends an hour a day doing her vest therapy that shakes her lungs loosening the mucus and the same amount of time doing breathing treatments. She does albuterol and hypertonic saline in her nebulizer. These treatments go in good spells and rough patches, both seem to last a few months.  In the beginning it was so easy! She was so little and the shaking would put her to sleep. She went through a major rough patch when the napping stopped and she just wanted to be free and mobile but now it is like clockwork unless she’s having a bad day… and then it’s meltdown inducing. But the meltdown can usually be cured with amazing gifts to moms like Paw Patrol, Wallykazam, and if its a major major meltdown Frozen will always do the trick. Limiting TV seems to be a motivating factor because our saying is “all done vest, all done shows” and at this point she’d probably do some extra vest time for extra TV time so she hasn’t put up much of a fight.

There are about 30,000 people in the US living with CF with about 1,000 new CFers born each year. Unfortunately, Anna can’t meet any of her Cystas and Fi-”bros” out there safely until there is a cure. Bad bacteria gets trapped in the lungs of CFers and at some point they are colonized and can’t be cleared from their lungs. These bacteria can easily pass from one CFer to the next, especially since they are prone to coughing. So far, Anna hasn’t cultured anything harmful and has only ever cultured normal staph which is very present in the environment and they only treat when it causes symptoms. One day I dream of Anna meeting her best friend and cysta Charlotte, while her mom and I look on crying tears of joy and hug each other as they hug.

We fund-raise because the truth is that CF is a horrible, ugly, selfish disease. Anna looks perfect but her insides are far from it. I don’t want Anna to ever suffer, I never want her to struggle to take a deep breath, I don’t want her sitting in a hospital bed, I don’t want her to have so many lung infections that eventually her lungs are scarred and losing function. But all of those things inevitably lie in our future without the researchers working so hard to find new therapies and a CURE for this disease and without the generosity, love, and support from people willing to fund that research.

Our way to cope is to find the positive. We are so blessed with a loving support system from family, extended family, friends, anyone who has read our story and been touched, anyone who has seen that beautiful blond with the curly hair and fallen in love. We get through every day by appreciating the time together, the healthy time, the silent nights where she doesn’t wake up coughing at all, watching her run at the park, appreciating this beautiful time and doing our part to ensure her healthy future.

When donating to the Cystic Fibrosis Foundation, 90 cents of every dollar goes directly toward research. This is a huge margin compared to other organizations and shows their dedication to finding a cure.

Bill Gates is a pretty cool guy. Not to mention a smart and generous one. He plans to do with his money as much as he can to make a real difference. The Cystic Fibrosis Foundation is one of the places he donates to because he knows that this is another disease that he can have a real hand in eradicating. A cure is truly on the horizon and you can be a real active part of curing a disease that has claimed the lives of far too many.

Here is a link to the drug pipeline for drugs currently being tested as cures and treatments for CF:

http://www.cff.org/treatments/Pipeline/

Kalydeco is already making a difference in the lives of the people with that specific mutation and many people are seeing a huge improvement in their lives. Unfortunately, Anna does not have this mutation but Ataluren, VX 809 +ivacaftor, and VX 661+ivacaftor, are all working their way through the pipeline now and target Anna’s mutation. Anna’s mutation is the most common, affecting around 53% of the CF population. Needless to say, researchers are working hard to find a cure for this mutation specifically and it is their top priority. You can also see the many new therapies they are working on that can improve the quality of life for CF patients and increase life expectancy.

Cystic fibrosis is an invisible disease, which makes fundraising a challenge. Look at the beautiful princess up there, she looks like the picture of health. But Anna and all of our family work really hard to keep her that way. We have been blessed with her health so far and we have nothing but hope for her future, but we have to fight for it just like we fight to keep her healthy every day. We have to do our part to raise funds that will one day give her the chance at a completely full, happy, and healthy life. Not to mention it will help me to stop embarrassing myself by crying my eyes out at every father-daughter dance at a wedding, heartbroken and feeling guilty for even letting myself think, “Will I see this?.” While she still wants to marry Daddy at this point, the day I see her dance with him in her wedding dress, breathing deeply, feeling wonderful, and looking so beautiful and happy, it will be the best day of my life.

Finally, I want to introduce you to someone very special. Her journey has inspired me beyond words. Her positivity gives me hope and lights my way in the darkest times. I am rooting with my whole heart for this girl who calls herself a “chronic badass.”  Her name is Caleigh Haber, she is 23 years old and from San Francisco. I’ve been following her journey on Facebook and you can too at Fight2Breathe https://www.facebook.com/fight2breathe.

Her website is fight2breathe.org. She is in the end stages of this disease and as of April 1st she was officially placed on the transplant list for a double lung transplant. She is fundraising for her transplant and I am hoping to donate a portion of the money raised by Anna’s Amazing Race to her fund. Please read her story and you will see why this tiny girl has given me big hope for Anna to live a positive and happy life and also some of the challenges that come with CF over time. Once Caleigh gets her new lungs, a cure will be more important than ever for her too. So get your teams together, spread the word to friends and family, and let’s have fun on race day and do our part to make a difference for Anna, Caleigh, Charlotte and all of their the cystas and fibros.

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Here Comes the Sun…. IT HAS TO RIGHT???!!! SPRING.. PLEASE!!?


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Wow. This winter has been pretty brutal for nearly everyone I know. There’s been a lot of cold, a lot of snow, and a lot of illness. The past month and a half has been full of illness for this family.

Jack got a cold that he couldn’t get rid of, he’s having his adenoids assessed to see if we need to remove them. Anna fought her little butt off trying to get rid of her cold for weeks but she’s officially off of antibiotics after a month and so far she’s still at her baseline of zero cough. So hooray!!! And she is a beautiful little ballerina in her ballet bunnies class, she couldn’t love it more! However, as much of a princess as she has become she still loves to wrestle too :)

Surprising, I’ve been the sickest of us all, while also being the one never allowed to get sick!! I’m currently fighting bronchitis that turned into pneumonia so it’s my turn for heavy antibiotics, breathing treatments, and steroids. As hard as it is to take care of everyone I’d take it over Anna ANY day. Feeling my lungs compromised in this way makes it’s makes me so much more dedicated than ever knowing how painful coughing is to make sure that what I’m feeling now is NEVER EVER Anna’s day to day life.

Oh and did I mention we moved this weekend?!  We are loving our new house but we are very ready for some warmth and calm in our lives.

Like I said, it’s been a crazy winter! To say we are looking forward to Spring is an extreme understatement…. AND the most exciting part of spring is ANNA’S AMAZING RACE!!!!! Our talented coordinator Robert has been working hard getting his creative clues made up and we are on our way to a great event. All we need now is YOU! We promise to make this year better than ever, with better routing, really fun and challenging tasks, and ultimately an awesome and unique experience for a fantastic cause. Every year we are learning from the last to make things better and more fun. I am SO excited about this years tasks that I wish I could race myself!!!  Sadly, I know too much.  This is a competition after all!! But I’ll be in charge of a really fun task, if you’ve been there the past few years you know it’ll be a good one!

This year our focus is going to be on fun AND on reaching out. Here are some awesome ways to raise money for your team:

- Tell your friends! It’s even more fun competing against people you know. Ask your co-workers or friends to make their own team and you can even get some bragging rights once you win :)

-Send emails!!!! You’d be shocked how many people you can reach who haven’t even heard of CF, and you’ll also be shocked by some people you may not know who also have been personally affected by CF and are willing to join into our fight. And donation or not you’ve informed one more person and we appreciate that so deeply.

- Check into your company and any match program they may run. Over the past few years more and more companies have been joining in a company match program where they match an employees donation to a charitable cause.

- Have a party! Doing something fun like having a party with games, beer olympics, flip cup tournament, or games of some kind that require a pay in that you can dedicate to your teams donation. Can’t fundraise without FUN right?!

- If you work in a school or grocery store where you can sell flyers please let me know and I can get them to you! Great way to earn money for your team.

- Ask your family! Being charitable is something to be proud of any ANY amount of donation is priceless to us :) P.S – Easter is on it’s way, great time to see your family and you can always look for some money filled Easter eggs :)

- If you work somewhere that they allow you to put a collection jar out for donations, contact me! I will set this up for you and help in any way I can.

- Check into restaurants that are willing to donation portions of a night of sales to your team. A lot of restaurants will be willing to give you a night where a portion of proceeds go to our event, I know Friendly’s and Isaac’s are two that definitely participate.  AND come to our event at Mudhook Brewery in York on Wednesday May 7th! Our very own Robert will be guest bar tending  and 20% of your check will go to our event!

Raising money is our passion because we are funding research for a CURE. And it is on the horizon, it’s so close but yesterday wasn’t soon enough when you’re a mom watching your daughter struggle and be different because of mutation in her genetic code. Raising awareness is our second passion, putting a face to this disease that so many people have never heard of. So please, get out there! Get a team together!

Please share our story on social media, it’s such an amazing tool that can truly change our lives and giving Anna a chance at a TRULY healthy life, free of this debilitating and currently fatal disease. One day we can all say WE had a part in curing the most prominent genetic illness.

So let’s do this my amazing friends and family (this means you especially Musso’s ;) We want to see some old man Musso teams out there! ). If we can get teams signed up all throughout this month then you’ll have all of April to raise funds and reach out! My heart is full with the love everyone has shown our family if over the past two years and I want you to know this means the absolute world to us. Thank you all for being part of this journey with us.

Now let’s all forget this miserable winter, look forward to Spring, and  have some fun!!!

You can up your teams here:

http://mycommunityevents.com/common/eventDetail.aspx?id=25061

You can donate to our event here:

http://www.mycommunitytickets.net/common/eventDetail.aspx?id=25062

We will also be creating a paypal account to make it easy for paypal users to donate that we will have available in the next few days OR you can also send donations to our NEW address:

233 S Pitt Street

Carlisle, PA 17013

All donations are tax deductible using the tax ID code 13-1930701

If anyone has ANY questions about the registration or donation process please feel free to contact me anytime at kmmusso@gmail. com.

We are looking forward to an amazing event with great people! See you all very soon!

 

 

Thank You, Thank You, Thank You!!!!!

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Anna’s 2nd Amazing Race was nothing short of truly amazing. It was a day full of encouragement and love. Words can’t describe what it meant to us to see the support of our families, loved ones, friends, and even people we have never met that somehow found our story and wanted to contribute to our cause. There are times that this disease can feel isolating, having to keep a distance between CF patients themselves, and the fact that while being a common genetic illness it isn’t all that common to meet other CF families.  Seeing everyone come together on this day to show their support for Anna and for our family, and to show just how many people are fighting with us for a cure, is the most wonderful feeling I could imagine.

Last year was our first year fundraising and we set our goal at $2,500. We were surprised and elated when we shattered that goal and raised a little over $9,000 for the Cystic Fibrosis Foundation. Inspired by last year, we set our goal high for this year with $10,000. I thought it might be unattainable a second year but this year we raised $12,315!!!!!! We are so grateful for everyone’s hard work in raising funds and incredibly thankful for the awareness you’ve brought to CF in the process.

This year we had 20 teams racing!! We were so happy to see familiar faces coming back to race again and excited to see some new faces join our cause! Some teams even found us by reading about our event in the newspaper which was a great surprise :) We had all new tasks this year, they ranged from things like our own version of ‘Are you smarter than a 5th grader?’, to making CF posters and raising awareness downtown, to acting out a scene from a play. We plan to keep changing the tasks every year and we already have a lot of fun ideas for next year!

After everyone got back from the race we enjoyed food, fun, a raffle, and awards. The top prize went to the Lime Green team who finished the race first having completed all of their tasks. The top earning team was the Cowgirl Team who raised $2,000!!! A very close 2nd was the Black Team who raised $1,500. And the most spirit went the Gold team who’s creativity pulled them through, although it was a tough match against the Ladybug team!

We are already looking forward to next year when the race will be held on Saturday May 17th. We will work until then to make it even better! We recently submitted the donations directly to the Cystic Fibrosis Foundation where they will be using it to continue research in search of a cure.

This Sunday our little Anna Rose turns 2 years old! We are so thankful for the past 2 healthy years and we look forward to a cure in the near future!  THANK YOU for being part of making our dream of a cure a reality and for giving her the hope of truly healthy years to come. In her 2 years since we even heard of Cystic Fibrosis we have raised over $20,000 toward a cure. We are so grateful for the love and support we’ve received and on behalf of Anna and everyone who loves her so deeply we thank you from the bottom of our hearts.

We’ve included a gallery of photos below!

We need to thank some incredible and generous businesses that donated to our cause either through food, gift cards, or donations:

WebpageFX

Giant Food Stores

Viet Thai Cafe

Brown’s Orchard

Mcdonalds

Annie Williams for Mary Kay

Marino’s

Accomac Inn

The York Revolution

Mudhook Brewery

Krispvisions

Heuters

Primos Pizza

People’s Bank

Chipotle

R.D. Fence Company

Thank you all so much! 

We weathered the storm! Here comes the sun…

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In our last post, I talked about the latest that was going on with Anna. Here’s a quick recap: After a few days of cold symptoms, an x-ray showed pneumonia in the middle lobe of Anna’s right lung. We were presented with a long list of scenarios and were facing a long hospital stay if she didn’t improve. We kept her on an antibiotic, increased her therapies to 3 times a day, and worked hard to get her healthy! It was VERY important to get the pneumonia resolved because it is when the lung is compromised that lung damage can occur, so we wanted to get it taken care of before that had a chance to happen.

It took a few treatment filled (and anxiety filled for us) days but she finally started to improve on Thursday of last week. Since then she improved a little bit every day but I wasn’t sure it would be enough to avoid hospitalization. It all came down to her x-ray. I haven’t felt anxiety like that in a LONG time. I knew everything would be ok and we would do whatever we needed to get her healthy but let’s face it, no one wants to be stuck in a hospital room for 2 weeks! I didn’t want Anna to have to go through the PICC line, or any of it. We spent a few days there last year but this year she is so much more aware and active and talking, I just didn’t know what to expect. I’m happy to say I STILL don’t know what to expect because we have narrowly avoided yet another hospital stay. Her x-ray showed that her lung was GREATLY improved. The x-ray looked completely different! It was the absolute best possible outcome. I’m so proud of her for being so strong and being cooperative during all of the extra treatments. She is our big, brave girl :)

So now, more passionate than ever for a cure, we get to get back to our fundraiser THIS Saturday!!! We are SO excited for Anna’s 2nd Amazing Race. We are thankful to all those signing up and and donating. We officially have more teams than last year and are really excited to hear all these new racers joining! We can promise you a day of fun and laughter for a great cause. Please share our video, send out emails, post on your Facebook page, anything! You will be surprised how many people will respond and regardless of the outcome you are spreading awareness which is HUGE!!

I wanted to let everyone know that when making an account on My Community Events website to donate, all of that information is required to use a credit card, it is completely secure, and the information will be used ONLY for your donation and nothing else! No spam, etc. We will also be taking cash or check donations either before or on race day. All checks should be made out to the Cystic Fibrosis Foundation. All donations are TAX DEDUCTIBLE!!! We have the links to sign up your team and donate linked here. If anyone has ANY questions about donating or signing up please let me know I am happy to help! You can email me using our contact form and I will get any info you need. Just a reminder we still have a team of 2 looking for 2 more members if anyone is short a few teammates! We are so excited to see everyone on Saturday. Thank you for all your support always and for your prayers and well wishes this past week. We couldn’t be more appreciative and we feel SO blessed to have you all in our lives.