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Team Sutton Grace

Wouldn’t it be great to cure CF? I constantly find myself dazed with those words. It is something that is getting closer to a reality, but not close enough. We have to keep fighting and raising money to get there. In order to give you a break from reading, JV and I recently spent some time putting together a video to explain just how important fundraising is and why Team Sutton Grace is so important to us.

Last year we raised close to $27,000. This year we are just over $14,000. There is still time to donate and help us reach our goal at http://fightcf.cff.org/goto/jeffburnett

Thank YOU so much for your support!

So Close, Yet So Far Away….

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It has been a long time since we have seen something so incredible happen in the medical world in regards to a cure for a disease. Over the years, CF has seen some amazing breakthroughs in medical research and drugs that have provided a positive impact of the life of a CFer. We have seen great drugs to hit the market that are specifically created and designed to assist in fighting a cowardly, but strong and aggressive disease. We have seen the miraculous drug, Kalydeco, impact the lives of CFers in a way that makes CF insignificant. And when that wasn’t enough, we fought even harder, and are now on the bleeding edge of a second drug that will basically cure another 60% of the CF population. All of this happened because we not only have a great foundation that is fighting the fight while we sleep, work and try to enjoy our lives as normal as possible, but because of the great support we have from family, friends and strangers who believe in us and our cause.

The bad news to this is that we aren’t done yet. Every CF warrior has made a vow to fight until CF stands for Cure Found. It may be simple to sit back when a “magic” pill comes along and removes many of the daily struggles of living a life with CF, but I know through the bond we have developed with each other through our weak moments and times of grief, we will stand by each others sides until the Cure is Found for all. And you may wonder what happens then, but I can assure you that these CF warriors will pick up something else and fight just as hard.

This is where I take a step back from praising the accomplishments of the CF community because of one small girl that came into our lives almost 2 years ago. Through all of the media, excitement and anticipation of the new drug on a fast track through the FDA, there are families like ours who are still sitting on the bench. We can’t help but be excited, but we are also still waiting on our turn. You see, Sutton isn’t a part of the either group that has or will benefit from the miracle drugs. Her genetic mutations don’t fit the make up. The hopeful part of it is that the amazing group of doctors and scientists are working towards the next miracle drug. No one knows for sure when that will come.

As I sit here an write this, I can hear a similar background noise that I hear every morning and night when I am at home. The dull roar of the “tickle vest” as we call it, the cry of a small girl who just wants to enjoy being 2 without the tether of a machine, a TV turned up just louder than the roar of the tickle vest so that it can help serve as a distraction to the never ending treatments. I often hear that Sutton doesn’t “look” like anything is wrong, but this silent disease does a good job hiding itself. I think many times we don’t even see the disease, but its those small reminders that we notice that keeps up paranoid enough to stick with treatments for 2 hours a day.

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This year I will be getting close to what was the median life expectancy of a CFer at the time Sutton was born. In the last two years, we have watched it grow to 41 years old which applauds the medical accomplishments of the doctors dedicated to CF. I can’t help but reflect on what it would be like to only live to 41 years old. In so many ways, I feel like my life is just getting started. I married an amazing woman 6 years ago. I have two amazing kids, but they are still so young. I started the career of my dreams. Thankfully, I don’t have any reason to place a median life expectancy on my life, but one has been placed on my child. That is probably one of the hardest things to swallow.

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We have a chance though. There is great hope in Sutton’s future. There is more than just a dream for a cure, there is dedicated research with proven results already taking place. We are at a place in time when it is even more important to fight for a cure to CF, however, we can’t do it alone. We need your help more than ever to keep the momentum going to make Sutton the next recipient of a “miracle” drug.

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On November 8, 2014, I will ride in my third CF Cycle for Life since Sutton was born as a part of Team Sutton Grace. Team Sutton Grace has grown from 2 people and now consists of over 100 people actively participating through The Great Strides Walk and the CF Cycle for Life. Team Sutton Grace has grown because of the great support of family and friends and the support system surrounding each of us. We like to think of all of you as a part of Team Sutton Grace because we can’t be a success without any of you. There is nothing that can ever express the thanks to each of you for all you have done to support us.

Anne Frank once said that No one has ever become poor by giving. I promise you the greatness of your gift is felt by adding another day for Sutton. The life expectancy has grown from 37 to 41 since you all started supporting us. You are adding more tomorrows. I am asking for your support again this year to help Sutton, help me add every possible tomorrow we can.

With Humble Gratitude,

Jeff, Brittany, Hiatt, Sutton and Team Sutton Grace

To Give: http://fightcf.cff.org/goto/jeffburnett

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A Cure Is On The Horizon!

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We have some exciting news to share with you!

As you know, CF is a genetic disease that causes a thick sticky mucus to form on the lungs and digestive system which can lead to difficulties breathing, risk for infections, lung damage, and digestive issues. This is a life threatening disease and the current life expectancy for someone with CF is early 40’s.

Jeff and I are both carriers of a defective CF gene (which we didn’t know until I was pregnant). In order for someone to have CF, both parents must have the defective gene and in that case, there is a 25% chance of both defective genes getting passed on to a child.

What complicates this even more is that there are more than 1,800 different mutations of the CF gene so there isn’t just one ‘cure’ for CF due to the complexities of the mutations.
Sutton has 2 different mutations (one from Jeff and one from me). One is F508del ​(which is the most common mutation) and one is G542x (which is more rare).

The story below is announcing that the Phase 3 trials for those with 2 of the F508del mutation are complete and an application to the FDA is will be submitted by the end of the year.
About 50% of people with CF have 2 copies of this F508del mutation so if this all goes as planned, we will be closer to a ‘cure’ for about 15,000 people in the US with CF. WOW!

Because Sutton only has one copy of the F508del mutation, this doesn’t directly affect her, but it is getting us one step closer to a cure as the trials and research continue.

We would not have these amazing advancements without all of YOUR continued support to fund this life saving research.

Team Sutton Grace has raised nearly $100,000 in just 20 months and its because of YOUR commitment to fight and walk on this journey with us, we really are one step closer to a cure. The story below has more details if you are interested in reading it.

Thank you again from the bottom of our hearts for all of your encouragement and support.

This announcement is ALL the more reason that we will continue on this journey and fight for our sweet Suttsy girl and others with CF everyday.
We WILL find a cure and will do it with you in our army.

Thank you more than you will ever know—

Brittany, Jeff, Hiatt and Sutton

Dance Parties, Fundraising and New Opportunities

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What an exciting year 2013 brought to our family. We have come a long way since we started on this journey and have great hopes for 2014. I do realize that it is already March, but we have just been busy planning for 2014. We want to make sure we take every opportunity to make a difference and we will do our best. Our family, friends and foundations we are connected to are all on board and many have already started off the year in a sprint.

Dance Parties!

Most of you know that Sutton is one of four 2014 Miracle Children for Children’s Miracle Network in support of Children’s Healthcare of Atlanta. The support and dedication of CHOA has been amazing and we want to do our part to help support them in return. Take a few minutes and check out her story on the Children’s Miracle Network website. (click here for Sutton’s story)

Emory University Dance Marathon

We had a great time at our first official Dance Marathon at Emory University. To see the passion of college students focused on kids is inspiring. To see college students make children with health struggles feel on top of the world is something very humbling. We had a great time and can’t wait to go back next year.

UGA Dance Marathon

Although it is normally against our family values to celebrate anything UGA, we can’t help but celebrate the the AMAZING accomplishments of UGA Dance Marathon. The students were so engaged and very enthusiastic about raising money FTK(For The Kids). They treated our family like royalty for an entire day. We were so encouraged to hear so many other CHOA success stories at UGA. The most incredible part of the day was the accomplishment of students raising over $500,000! Truly amazing and a well deserved “Go Dawgs!”
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GT Dance Marathon

The Georgia Tech Dance Marathon was like being at home for us. We encountered another group of students with the same passion and caring as we did at Emory and UGA. We were once again blown away by the selfless efforts of college students raising money to support CMN. We had the opportunity to hang out with some incredible students and hang out with Buzz! Hiatt spent most of the morning chasing around Buzz and sitting in the drivers seat of the Ramblin Wreck. Sutton was loved on by just about every girl there and even had a chance to hang out with the GT cheerleaders. We found out that there is a Sutton on the cheerleading squad this year and can’t wait for the girls to meet! It was truly a special day and one we will never forget.
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Fundraising and New Opportunities

The Burnetts dont divide our efforts, we multiply them! We have so many great opportunities in store to help support both CFF and CMN/CHOA. Every opportunity we get to help raise funds and awareness for CF is one step closer to a cure along with so many more tomorrows for Sutton and every other CFer out there. Team Sutton Grace made such an impact this past year on raising money, awareness and hope. It is truly amazing to see how so many of you are already planning and fundraising with new ideas and expanding on the many events that we will participate again in support of CFF. There are many new ideas that are under way and we can’t wait to share them with you as they develop and raise even more money in 2014. $60,000 is a big number to beat, but we have confidence that we can do that and more this year with the support of all of you. We will be sure to keep you up to date through our many networks so that we can have a blast while also wiping CF off the map.

This years calendar for CFF is already filling up and we would love to have you join us at any of the following official events. As always, you can join our team by searching for Team Sutton Grace or emailing us at teamsuttongrace@gmail.com.

Shamrockin for a Cure – March 8, 2014 at Verizon Wireless Ampitheatre
The DEFINITIVE party on the north side is BACK for it’s sixth year at the Verizon Wireless Amphitheatre in Alpharetta. ShamRockin’ For A Cure will rock again with our live 80s band, incredible food and drink, live auction, silent auction, and more entertainment in one night than you can imagine!

http://www.shamrockinforacure.com/

Great Strides Walk – May 17, 2014 at Georgia Tech
Great Strides Atlanta Presented by Snellings Walters Insurance Agency is proud to be the largest cystic fibrosis walk in the country, raising over $1.4 million through the help of 2,500 walkers. Walk day is a fun, family-oriented event with a healthy 5k walk, children’s activities, food, and festivities that the Atlanta community looks forward to year after year.

http://fightcf.cff.org/site/TR/GreatStrides/40_Georgia_Atlanta?team_id=17880&pg=team&fr_id=2047

Wine and Roses Gala – April 26, 2014 at Atlanta Athletic Club
Black-Tie Optional Dinner Dance, Silent & Live Auctions, Heads or Tails Raffle, Champagne Reception, Seated Dinner with Wine Pairings, Live Music, Dancing Until Midnight! It’s your chance to be high class and in style all while curing CF. An amazing night worth every penny!

http://www.cff.org/Chapters/georgia/index.cfm?ID=26501&blnShowBack=True&idContentType=1328&Event=26501

Battle for a Cure – 2014 date TBD
An amazing night of food, drinks and fun! Atlanta chefs from you favorite well known restaurants battling it out for the best dish. The best part is that the guests are the judges. Keep and eye out for this years info for a great time you won’t want to miss.

http://www.cff.org/Chapters/georgia/index.cfm?id=24088&event=24088

Cycle for Life – November 8, 2014 at Serenbe, GA
Get your wheels in motion and join us for our 11/8/2014 annual bike tour as we ride through some of the most picturesque and scenic terrain in Atlanta, Georgia. CF Cycle for Life is a fully-supported ride with route options of 15, 30 & 65 Miles miles. From breakfast to our cycle post party, you can enjoy fully stocked rest stops every 10-12 miles, bike mechanics for bicycle maintenance and repair, ride marshals to cheer you along the way and plenty of support vehicles to help you complete the ride. This unique event empowers participants to take action and demonstrate their fight in finding a cure for cystic fibrosis in a tangible, emotional and powerful way.

http://fightcf.cff.org/site/TR/Cycle/40_Georgia_Atlanta?fr_id=2550&pg=entry

We are going to DC!

Not forever, but some of you were thinking it… Brittany and I are humbled and honored to be invited to the 2014 CF Foundation National Volunteer Leadership Conference in April. It is an amazing opportunity to connect with other dedicated volunteers from around the country and share ideas on how to win our battle against CF. We are going as guests of CFF in Georgia and can’t wait to report back to all of you on what we learn.

We are excited about the year to come and all of the great opportunities to make an even bigger impact on CF than before. We couldn’t do this without all of the people we like to call Team Sutton Grace which includes you! Be on the lookout for news to come!

A Year of Grace

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What a year it has been.  This past year has shown us love, compassion, endurance, understanding, patience, and most of all a knowledge of persistence to fight for the things that we are passionate about.

We have seen the inside of just about every ED room at CHOA Egleston with over a dozen visits.  There is a lot to be said for the Nurses and Doctors that have been a part of our lives as we rush in to the ED, heart racing and not knowing what we should do, yet somehow, the CHOA ED staff always makes it “All Better” in no time, showing compassion and care for all of us.  We have learned that having CF also gets a ticket into a room much quicker than normal.  A trip with Hiatt reminded us that non-CFers have to wait the 2 ½ hours for a room on a busy night.

We have met the entire team of Nurses and Respiratory Therapists as we called “5 West” home five times, learning the do’s don’ts of CF hospital stays. We learned how to manage our family, work and hospital life all in the same breath.  We learned that the hospital sink makes a great Jacuzzi for an infant and a comical relief from hospital life.  We learned that the nurses of “5 West” are truly special and have a genuine heart for what they do, taking extra time and care with each child that enters its walls.

We have experienced a true sense of gathering from out family and friends.  One amazing thing about CF is how it touches people and they grow a passion for fighting beside us to cure the disease.  Our family and friends have joined us this past year in raising just shy of $50,000 as a part of Team Sutton Grace for a cure to CF.  We have experienced more love from our family and friends this past year, helping us feel a great sense of support.

Corrie Smith has made a commitment to volunteering at the CF office this coming year, once a week, to help fight for her cousin.  Tim and Amy Smith have put together a fundraising event that has the hopes and potential to grow each year in support of Team Sutton Grace.  Sue Shaw and Becky Burnett have been our largest fundraisers and have played a huge role in building Team Sutton Grace.  Britt and Sammie Williams have been instrumental in support of our home life with last minute calls to help with Hiatt and Sutton and just showing up at the right time, when we need it most.  JV Gortney has been a supporter, fundraiser, executer, builder, planner and gives so much of his time to help Team Sutton Grace grow and has been critical to the success of our fundraising.  TJ, a long time friend and part of our family, has gone the extra mile to make sure everything is perfect with our stays in the hospital, always there on those late nights when Sutton isn’t well and helps us figure out what is best, and always supporting us in every way she can.  Joan Turpin has been a huge support with an extra set of hands at the hospital and at home, not to mention she can get the kids fed, bathed and in bed all before 8pm.  George and Ellen Burnett will pick up and drive to the hospital or take Hiatt in their home when we have too much to cover on our own.  Dr Kim Wise gives us extra attention and has been fully invested in Sutton’s growth and care, even in her personal time.  The teachers and staff of day care have gone the extra mile, taking on the daily meds, extra special cleaning, our eyes and ears for health and growth and making sure they are just as much a part of Sutton’s care during the day when we are off to work, going above and beyond the normal duties of their job.  The countless friends, friends of friends and even strangers that have supported us in fundraising and encouraging words that get us through each day.  The list goes on and on.

We have learned A LOT about CF, with so much more to learn as we go day by day, with 2 hours of treatment, ever changing medicines, doctors visits and every proactive thing we can do to fight CF.  We have become experts at administering pills to a 5 day old through a 1 year old.  We have learned the scientific explanation and the conversational explanation of CF and just how to explain it to everybody.  We also have learned that we have so much more to learn.

We have made so many new friends through CF.  The CF Foundation has become a part of our family and our lives.  They are always there for us and go the extra mile to make us feel special as well as all the other CFers.  The numerous families that have CF children who share the same passion for a cure gives us a hope with a cure on the horizon.  With only 30,000 CFers in the US, we sure have felt like there are so many more with the number of connections we have made.  The best part is comparing notes on how to live life, making things as simple as possible for our children.  We have met some inspiring CFers that give us hope for the future as they have paved the way to make the lives of the younger CFers easier.  They have beat the median life expectancy given to them and are conquering CF with confidence.

We have watched our family of four grow into something amazing.  Brittany has become the biggest super mom in the world.  If you ever want to see somebody conquer the 25 hour day, come to our house at 530am and watch the wonders of a mom with a full time job, toddler, dog, husband and CF kid tackle the day, hit the pillow and get up the next day to do it all over again.  (By the way, we don’t get weekends off).  Hiatt has grown to be a part of Sutton’s daily life, making sure the “tickle’ vest and the nebulizer are set up correctly and in full working order, day and night.  You better be careful not to try to manage these tasks on your own, otherwise you will experience an upset 3 year old, shut everything down and start all over.  Those jobs are for Hiatt and he wants to be a huge part of Sutton’s therapy and life, teaching her things every day.

2014 is a new year for us.  We are hoping for adventure, growth and success.  We are hoping for a monumental year for CF research and breakthrough.  While it doesn’t work for Sutton, another miracle drug is on the horizon for another large group of CFers, giving us hope that Sutton’s miracle drug is coming.  We won’t stop fighting until CF stands for Cure Found.

As we close our 2013 and the long, tiring year it has been for us, we want to say how humbled we are by this past year.  We have been making an effort to thank everyone individually for the support you have given to us.  There are so many of you and I know we have somehow missed a few, but know that we will get caught up one day and won’t stop until we do.  But for now, we want to make sure that everything little thing done for us is greatly appreciated.  And the last thing I want to close this year worth of blogging, and the biggest thing we have learned, THANKS and that there is still time to donate for 2013 to CF by going to www……, just kidding.  With Sincere Gratitude, Thank You All!

26(+) Acts of Kindness

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We have made it through another amazingly short hospital visit. Sutton was released to come home for her protection from other illnesses lurking at the hospital. She still has some junk inside her, but we are able to manage the treatments at home for now. There is some good and bad to it all though. Sutton and Hiatt have to be separated for a few days and with a house built for a mouse, we had the challenge of sending Hiatt off to “Pop’s House” for a few days. Good news is that I will get to spend some great one on one time with Sutton as we prepare for her One Year Birthday Party this weekend. All in all she seems to be doing better every day and we will again stop at nothing to help her get to her best.

This year for our Cycle for Life fundraising, we are focusing on two people, as well as keeping up the pace for all of those with CF. As we fight each day to help cure CF for Sutton, we also fight to end the disease for all CFers. (Warning:Kleenex Alert)

Earlier this year, Brittany and I were led to know of a girl fighting CF to live… Here is her story:

My name is Rosie, and I am 24-years-old. Raised in a very large and loving family, I was fortunate to always be surrounded by warmth and laughter. After four years of university, I graduated with an Undergraduate degree in Education. My dream was always to teach preschool. For the last three years, however, my career has been postponed. And perhaps it is gone forever. The reason being, I also face health challenges: I was born with a genetic lung disease, Cystic Fibrosis (CF). And after graduating, my lungs began to decline…

…I am now on the list for a double-lung transplant. And every day is beautiful.

I have known for over a year that this was my fate. And I have had many dark moments because of it. But through the darkness, one thing has always helped me to rise above.

Love.

And now, though my health is just as unstable and my fate more uncertain every day, my spirit and heart is stronger than ever. I feel love in the faces of my family, friends, and strangers. I feel love in the wind and the trees and the setting sun. I feel love in the grass beneath my feet and the sound of my nephews’ laughs and the touch of my loved one’s hand. I feel love in everything. Especially the brief moments that I share with new beautiful strangers. Every hello, every smile, could change the course of someone’s day. And I thrive on those everyday beauties.” -Rosie Alma

Brittany and I took a chance to connect with her and discussed meeting Rosie and visiting her through her recovery. We got busy, things got hectic and we just never had time. Time is an important lesson that Rosie taught us as well as love. We learned later that Rosie had her new lungs but they didn’t agree with her body. Rosie’s body was defeated by CF, but her heart and soul defeated the disease with compassion. Rosie passed on June 17, 2013, almost a week before her 26th birthday.

You are probably wondering why I am sharing such a sad story, but that’s not the case at all. Rosie, though we never met her, was a beautiful, positive, caring, loving and giving individual. For her 26th birthday, she asked for friends to give 26 Acts of Kindness. She wanted to spread love through the world. Rosie said “All I want for my birthday, and every day, is to spread love. Please help me in doing just that. I could not ask for anything more”. Rosie’s wish was held true and the random acts go above and beyond 700. She shared her gifts with everybody and while her reports of acts stopped at 718 on her blog, I see from the countless notes on facebook from friends and strangers alike, that her acts of kindness will go on forever.

This year we are riding in Honor of Sutton, but also in Memory of Rosie Alma. We are asking that each of you that give to our ride in Honor of Sutton, Ask one friend, family member, co-worker or even stranger to give another donation in memory of Rosie. We also ask that each of you give one random act of kindness in memory of Rosie. We can end this disease, we have to end it. We are reminded of its harshness every day, all day as we take care of Sutton. It is our wish for Sutton to tell her grandkids about the horrible disease that used to exist, but that we fought it down to nothing, and that if we put our minds and energy into something, we can do our best to make it happen.

Something that I personally find helps to increase my feeling of love: rather than focusing on how much love I am receiving (whether from family, friends, a significant other, or the universe in general), I try to focus on the love I can give. To those I hold close, to strangers I meet, to the nature and existence and whole world around me. I try to treat all of existence with love and compassion. And I find, ultimately, that projecting love outwardly returns an unimaginable wealth of love to its original source: i.e. you or I.”- Rosie Alma

Help us show Rosie’s love for this years Cycle for Life. We are on the edge of something that can cure CF for everybody. Through all of the struggles of our country, we are afraid of the medical struggles that might lie ahead, but we can’t wait on others. We have to move ahead. We will fight to add every tomorrow we can for Sutton and continue to pass of Rosie’s love for all.

Will you help us?

http://www.cff.org/LWC/jeffreyburnett

You can read more about Rosie at the following links:

http://www.positivelypositive.com/2013/06/18/stop-making-excuses-other-lessons-from-rose-rip-rose-alma/

https://www.facebook.com/pages/Rose-Alma/270064006438737

http://weareone-wearelove.blogspot.com/

Back again…

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Time for another update!

First off, I know many of you are wondering about Sutton. We have had a rough week so far, but we are on the right track. Last week was the beginning of a cough that quickly progressed over the weekend into something a little more substantial. An official kickoff to cold season has begun with her first antibiotic and as the week progressed, so did her effort to breathe. After slowly increasing treatments and medicine, we finally reached a point where we felt it was necessary to bring her over to the hospital. After we finally got admitted to a room(the ER was a madhouse!), we got settled in, Sutton had a few treatments and then it was bed time. Sutton was all hyped up albuterol so she just wanted to play. I finally got her settled into bed at 4:30AM and she woke up at 8AM with a smile ready to attack the day, until about 9:30 when she was exhausted and ready to sleep.

A couple of weeks ago, Brittany and I were guests on a radio show along with Amanda Gilbert from the Ga CFF office. The show was titled “Dr. Fitness and the Fat Guy”. Since 2005 The Dr. Fitness and the Fat Guy radio show has been educating, inspiring and motivating listeners all over the world in their quest to lose weight and lead a more active healthier life. They constantly have guests on their show focusing on different active lifestyles. It was a great opportunity to share a little of our story and raise awareness for CF. We focused on our upcoming bike ride on Nov 9th. Take a moment to hear Brittany’s great radio voice and my average radio voice by clicking on the link below.

Cycle for Life – Team Sutton Grace Radio Interview

A very important part of our lives is raising money for CFF support. I’ve said it before, but this is our life line to curing CF for Sutton. We can’t change the world on our own, but if we pull ourselves together, we can make one heck of a dent! We are almost in full stride with raising support for the CF Cycle for Life and this is where we need you to help us. Every little donation counts and gets us closer to a cure. Look for our link on our home page if you can spare a few dollars. We can’t thank you enough.

As our weeks progress and we get closer to the upcoming CF Cycle for Life, we are focusing on different achievements and stories through our posts. Look for an email update each week to follow along.

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