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Reflections

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I constantly keep reminding myself to blog, but I always find it hard to find the time. It seems when we are healthy and able, we are always on the go. But I recently realized that we have a lot of followers and it’s only fair to share in the good things happening in our world. 

Since my last post, there has been a lot happening. We are constantly advocating for the things we believe in that have been so significant in our journey. We have been so involved in those things that it has become the road we travel as a family. We have encountered so many amazing parents, just like us, who will do anything they can to fight for the health and happiness of their children. 

Rather than post one mega blog entry, over the next few weeks, we will take the time to update everything that has been going on in our lives. I promise to do a better job keeping up with the our story and our fight as a family to cure CF and be  a part of something bigger than we ever imagined. 

Julia Ray, Miss Philadelphia 2015, who also has CF said “You can google CF, but google doesn’t tell you the whole story.”  Every story is different and we use this blog to share ours and some glimpses of others. Stay tuned for the next chapter…

Catching up with old friends…. (That would be you!)

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First, I want to be sure that I apologize for the lack of posts for the past year, but hey, no news is good news! Well, no news IS good news for sure, but that isn’t quite fair of us not to share in all the good news from the past year. Let me start with the most recent news and work our way back… but before we begin, I want to add that Sutton has been healthy over all this past year and has not had any hospital stays.  We have had a few stubborn colds which require 3 weeks of antibiotics for a CFer, but nothing major.  At her last CF clinic visit, the doctors made a point to say that her lungs sounded clear and better than ever.  As Hiatt would say “We punched CF in the face”!

Breaking News….Captain Kalydeco‘s new sidekick, Orkambi Man, Rescues Thousands!

…The evil villain, Cystic Fibrosis, was once again defeated by super hero Kalydeco and his new sidekick Orkambi!  Kalydeco has been fighting the evil disease for almost 3 years with huge success, but CF had a strong hold on so many that Kalydeco needed help.  Kalydeco’s leader, Vertex, came to the rescue by recruiting a new sidekick, Orkambi….

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Back in 2012, you may recall the introduction of Kalydeco to the drug world.  At the time, it only helped about 4% of CFers, but it was making a HUGE difference.  We have encountered so many CF patients who are taking Kalydeco and it has changed their lives.  They are gaining weight.  Their lung function is getting better with slowed damage.  They are able to get rid of bacteria that was once labeled to stay and aren’t getting sick as much, if at all.  I met a CF mom in DC last month who has a son on Kalydeco that is doing so well, he has no other therapies or medicine on his daily regimen.  Imagine not having to do the vest or nebulizer every day for 2 hours…That is amazing!  To top it all off, the FDA expanded the approval of Kalydeco and it now is helping many more patients who happen to have the gene mutation that Kalydeco can help.

July 4th will always be Independence Day for the United States, but July 2nd will now be known as independence day for about 50% of CF patients who are carriers of two Delta 508 mutations.  On July 2nd, the FDA approved the use of Orkambi, Kalydeco’s sister drug, which functions in a similar way as a corrector drug for CF.  A corrector is not a cure, but allows the drug to correct the underlying cause of the disease to a point which is significant to the patient.  Orkambi, although studies show is not as effective as Kalydeco, is the new miracle CF drug that will allow approximately 50% of those with CF to move towards better cellular function and ultimately improve health while decrease permanent lung damage.  Orakambi is welcomed into the CF community with opens arms after a lot (I cannot even express how much) of sweat and tears went into its existence.  So many patients, parents, family and friends have been waiting on this day and have worked so hard to raise money and awareness to get here.  While it isn’t a cure and we still have a lot of work to do, Orkambi and Kalydeco are a HUGE win for the CF community.

Not to slip in some less exciting news, but Orkambi, like Kalydeco, will not help Sutton.  It is a bitter sweet celebration for us as we watch so many parents celebrating this monumental day in their lives, but we also know that this doesn’t change the fight for them.  Everybody is in this fight until CF stands for Cure Found for everybody, and we aren’t there yet.  But we will celebrate every victory with every CF parent because we are a team in this fight together.  Oh, and I can’t leave out a little snippet that there is something in the works for Sutton’s mutation… but I that is all I can share for now.

Ms Smith Goes to Washington

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On June 25th and 26th, while many of you were watching the numerous Supreme Court announcements, Sutton’s cousin Corrie Smith was hard at work on Capitol Hill.  On June 24th, I had the honor to accompany Corrie to Washington, D.C. for CFF Teen Advocacy Day.
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Corrie joined 62 teens from across the country to meet with over 250 State Congressman and Representatives to advocate for their friends and family with CF.  Each teen had a story to share and came prepared to Storm the Hill!  Corrie was joined by Charlie McCollough and his mom, Julia, from St Marys, Georgia.

Corrie and Charlie met with 7 Congressmen offices on June 25.  It was truly an amazing experience, not only for Charlie and Corrie to advocate on behalf of CF, but for Julia and I to be amazed at what these two could do.  Corrie was there to tell her story about Sutton, her daily treatment and struggles, as well as how it affects so many peoples lives.  Charlie was there to share the story about his friend and how he has grown up watching his soccer buddy struggle with CF.  Even more amazing is the information and “asks” they had for these Congressmen.  They walked into those offices like professionals, dressed in their best, and grasped some hearts.

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Corrie and Charlie had an important mission that day.  They were asking for the Ensuring Access to Clinical Trials Bill to pass through the House and Senate, also known as EACT or S.139/H.R.209.  Sounds complicated doesn’t it?  Well, you are right, and Corrie and Charlie got it right with little support at first, but by the end of the day, they were professionals!  They also expressed the importance of EACT, the FDA and NIH to the approval of drugs such as Kalydeco, Orkambi, and future drugs that help those with CF as well as other drugs for rare diseases that rely on research for their existence.  Even more amazing is that they had as little as 20 minutes to fit in before we were rushing off to the next meeting, sometimes on the other side of Capitol Hill (don’t forget security checks at every building). Throw in lunch, a few photo ops, a private tour of the Capitol building (we even got to sit in while the House was in session!), and a party that night!  That makes a long, memorable, amazing day that I’m sure nobody will forget.

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So you are probably now confused about EACT, S.139/H.R.209 and everything I have thrown at you…but I won’t go into details except that IT PASSED!  I am confident that the work of Corrie and Charlie as well as the other 60 teens who took The Hill on that hot day in June had a major part in the bill.  You can read the CFF press release on EACT here.

You can’t go to Washington, D.C. and not take time to walk 15 miles!  Corrie and I took every opportunity that wasn’t filled with CFF excitement to explore our Nation’s Capital from Georgetown to monument to the Museum of American History and much more.  It was the experience of a lifetime and I am so thankful and proud of my niece Corrie.  We had a great time together and are already planning to go back next year.

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Making GREAT STRIDES with a GREAT TEAM!

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On May 16, over 100 of Sutton’s friends, also known as Team Sutton Grace, for the 2015 CFF Great Strides Walk at Georgia Tech.   Together we raised over $19,000, bringing us over $125,000 since we started Team Sutton Grace back in 2012.  As a team, we truly are making a difference in the fight against CF and it is paying off.  We have worked hard raising money which goes to the CF Foundation for medical research.  This research is the reason we have medications such as Kalydeco and Orkambi and wouldn’t be here if it weren’t for your support.  All of you have been working hard to raise money in so many ways and it is truly adding tomorrows for all of those with CF.

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Thank you to all of our supporters, friends and family, who came out to walk this year.  It was another great year and our team continues to grow.  We have one of the largest Great Strides teams in Atlanta and we only plan on growing.  You all are so important to us!  Thank You, Thank You, Thank You!

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By the way, this year’s Great Strides Walk in Atlanta alone, raised over $1.8 million!  That’s a lot of tomorrows!

Coming Up…

We still have work to do and we can’t do it without you.  Even though there is a lot of excitement around the breakthrough drugs, as I mentioned before, we are still waiting on drugs and treatment that will extend the life of our sweet Sutton and ultimately work towards a cure to CF for all.  We are working towards the next big idea to help take Team Sutton Grace to the next level and raise even more funding for medical research.  We need each of you to help us in this effort.  You can help by recruiting friends to help raise money and to join us as a part of Team Sutton Grace.  As we close out this years Great Strides Walk, we are already preparing for the CF Cycle for Life in October.  We need team members, both pro and casual bike riders, to join us as we ride distances of 15, 30, or 65 miles on October 3, in Senoia, Ga.  If you aren’t a bike rider, you can still join us a virtual rider or help raise money in any creative way you can think of.  We have a great momentum going and the results that are reported to us by the doctors and scientists conducting research are promising, but they can’t continue without our support.

To join the Team Sutton Grace CF Cycle for Life Team, click here.

Thank you again for all of your support.  We couldn’t do this journey without each of you.  We are constantly amazed by the people that surround us.  Sutton will get every tomorrow she can because of you.

 

Get ready—its time for Great Strides 2015!

Get ready—its time for Great Strides 2015!

Hard to believe that a year has passed since we’ve talked about Great Strides!

Thank you, thank you, thank you again for helping Team Sutton Grace raise over $100,000 in just 2 years! We continue to learn more about all of the exciting advancements and additional research on the horizon and we are getting SO very close to finding a ‘cure’ for cystic fibrosis (CF) but still want and need your help!

As you know, our sweet Sutton is now 2 ½ and growing more each day. We’ve been so fortunate and survived a tough winter without any hospital stays in about 15 months (whew!). She’s growing and talking more each day which is so fun to watch!

In addition to all of the fun, we continue to fight a tough battle to keep her healthy. Every. Single. Day.

We couldn’t do it without all of the support and encouragement from each of you and for that, we are forever grateful.

Each year, the Cystic Fibrosis Foundation (CFF) hosts their biggest fundraising event, the Great Strides Walk.

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The 2015 Great Strides Walk will be on Saturday, May 16th and will once again be held on the Georgia Tech campus. We had about 70 people come out last year and would love if you could join us again this year!

The walk starts at 9:00am (registration is at 8:00) and is an easy 5k walk around the school campus. Food, drinks, music, and fun make it a great morning for all.

And yes, for those of you wondering, we will have a new limited edition Team Sutton Grace shirt for anyone donating $25 or more!

If you can join us on May 16th, simply click on the link below and click on ‘Join Our Team’ and you can do some personal fundraising on your own if you’d like. Once you register and will get a personal link that you can send to friends, family, neighbors, your mailman, and anyone else who can join us in the fight (if you are comfortable doing that). Easy peasy.

If you can’t walk with us on the 16th , you can click on the link below then click on ‘Donate to a Team Member’ button so you can support us in spirit if you wish.

http://fightcf.cff.org/goto/teamsuttongrace

We will send more details as the walk gets closer, but if you have questions, feel free to let me know. Sutton hopes to see each of you in May!

Thank you, thank you, thank you for ‘adding more tomorrows’ for my sweet Sutton and all of those with CF everyday.

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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!

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