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….
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
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.
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.
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.
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.
Making GREAT STRIDES with a GREAT TEAM!
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.
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!
By the way, this year’s Great Strides Walk in Atlanta alone, raised over $1.8 million! That’s a lot of tomorrows!
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.