VERTEX TRIKAFTA APPROVED BY THE FDA | EMOTIONAL CF PATIENT REACTION!
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- Опубліковано 21 жов 2019
- Vlog 10.21.19 - An emotional milestone for the CF community!
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A day that changes the trajectory of CF. A day full of tears and hope. There is still 10% of the CF population that is without a genetic modifier- we must press on to find a treatment for 100%!!!
I'm super excited!! My bestie will start hers soon I hope!!
You just go ahead and Cry Girl!!!... I was crying with you x
Tears within the first ten seconds of the video! Well with the notification...HAPPY TEARS! We can do this! Hope you are having a great day with friends (:
I love rambutan! I wish it was avalabe al year rount T_T I went to thailand and I probably ate 7 grocery bags worth in 3 weeks XD
That's the power of prayer, Guys!!! This whole UA-cam family has been praying for this and now He has done it!! Happy Day!
As a medical researcher, i love to see the impact of our bench work on the real lives of patients! It is overwhelming to see the relief & joy for you
Thank you so much for all your hard work!
😀🤗
Thank you for all your research!
Have you seen the cost,of this medicine?
Thank you for all you do! I’m hoping I’ll see a cure for Chronic Lymphocytic Leukemia in my lifetime 🙏
That was my husband you met in Bed, Bath & Beyond! Thank you soooo much for your sweet video and welcome home to Durham!!!!!! And wooooohooooo FDA approval!!!
I was able to raise $65 for the CF Foundation last month through my birthday fundraiser.
Breanna Alger ; good job and I hope that made you happy
Excellent!
As a person with cf, I say thank you so much
Woohoo!!
I am so happy to hear this drug was approved. It comes at a hard time for me, as my family just lost someone due to CF this morning. She lived an amazing 27 years. While this medication wasn’t here, in time for her, I am so grateful it will be here for everyone else that needs it.
I know my comment is late but I hope ur doing well & have had time to heal & process ur loss. I'm so sorry for ur loss.
May this help improve the lives of many people living with CF.
I wish I could tag all of the scientists, lab staff, clinical trial patients, their families, etc so they could see/hear the impact of what they sacrificed/invested.
Diane Frame speaking as somebody who has been in cancer research for more than 8 years, we know. 😊 but it is still impactful to see it on such a personal level.
You were the first person I thought of when I saw that headline!!!
She was the first person Im so happy for her and all those that suffer from cf this is awesome
Yeah!! Thank you to the researchers, doctors and to all the brave cf patients. This is the best news of the day! Thank you to Hannah for helping raise money. Prayers are being answered. Thank you to Mary-and Peter for keeping us Informed. God is good!
Such incredible news!!! Oh I’m so excited for all the CF population!!!! It gives me hope that maybe someday there will be something for the genetic connective tissue disorder Ehlers-Danlos Syndrome that I suffer from!!! Congrats to all of you about to start on an incredible journey to improved health and changed lives!!!!!!
Isn't EDS genetic, meaning it is passed down?
cellogirl11RW yes. As is CF.
cellogirl11RW so is CF..
Peter: "I just think it is funny that you are more embarrassed to check out with it than to publish it to thousands of people on the internet" -🤣🤣 On a serious note: Yay for Vertex!!!
I loved when he said that lol!😂🤣
Crying happy tears, what FANTASTIC news! God bless all who have made this possible! X
I am so beyond happy for you and the CF community. I hope it brings a lot of relief to a lot of CF patients!!!
I’m so happy, seeing how much this has changed your life makes me look forward to the future! Bless you both. Onward!!
The power of medicine is wonderful. Congrats to all the patients!!
Celebrating this victory with you, praying that it will benefit many, many people that are struggling and fighting the good fight against CF. Congratulations and keep fighting! 🍾🎈🎉
Someone is cutting onions 😭😭😭😭😭
Michaela Rososky everyone seeing this is crying ecstatic tears!!
Yaaaas darn it they better stop cutting onions 🤩🤩🤩🤩🤩🤩
Ok I commented on your page on Facebook before I watched this to the end and you keep making me cry. This is such fantastic news. So thankful for all the support and research that lead to this.
That's amazing!! Seen it in the news a few hours ago and knew it would be the title of the next vlog!!
This is the best video I have watched! Love your family! 💛
I am so excited for you!!! Hoping with all my heart that this make your life easier!!!💜💜💜
Crying tears of joy right along with you, Mary! Amazing news!
You know what amazes me about your Vertex meds? You had a cold and did NOT have to go to the hospital. You were just kind of tired, achy, and had a cough. Just like anyone else. Now THAT'S amazing!!!
Mary, I understand exactly how you feel. I was born in 1965 with Spina Bifida. Back in the day when it did not even have a name, much less any kind of treatment. Luckaly my Father was in the Air Force. Thr military was on the cutting edge of science back in the day, so my doctors devised a treatment plan that consisted of 27 operations. Which would hopefully get rid of the fluid on my brain and rebuild me from the waste down. It was a life long process. I had my last operation when I was 12 and spent almost all of the first 12 years of my life in the hospital. It was a nightmare at the time, but I am so thankful for every second of pain and hard work I went through. They are still using some of the very same treatments today that they used to save my life. I can not even begin to tell you how thankful I am. Because of the things they learned from me, they not only saved my life, but they have saved thousands of other lives. I am blessed every day by the miracle I was given and the ability to help others.
Oh Mary!! My heart leapt when this popped up today!! I am so happy! I don't have anyone in my life with CF, but I feel so emotionally invested in your journey. ❤️❤️❤️
I’m so excited, we are starting it this week and I couldn’t be happier
My cousin bedazzled squatty potties for all of her bridesmaids as part of their gifts for her wedding 😂
What is it?
😂
@@fevertree1957 It's a stool that goes in front on your toilet. You prop your feet up on it while you sit on the toilet to go #2. It's supposed to put your body in a better position for having a bowel movement
I got one for my dad, he really likes it!
Ha! My Mom made her own :) Seriously! She used to do woodwork. Not so now, but she really did a few things. Like built me a bookshelf. That was when I was a teen.
Congratulations! You thank everyone but I will say, THANK YOU, for bringing awareness, through social media, contributed to to the evolution of finding improved treatments for CF patients. Your reaction to this announcement was so heartfelt, so moving, this made me cry. But I am so happy for both of you!!! Well done!!!!👏🎉❤💙💝
Oh my Mary - you got me choked up on this one! Praise God for this new medication! AND I'm sooooooooo glad to hear your feeling better!!! I feel like the last couple of colds you've gotten it's landed you in the hospital so to be able to fight it with oral meds is CRAZY!!!!
Congratulations Mary...AND Peter! Awesome news and so big for everyone else!
Wonderful news!!!! Tears of joy ....so awesome. Hope for so many more CF patients......such a blessing!! 🤗❤️❤️🙏🏼🙏🏼
Wow, whoa, what???? I'm cheering you guys on. This is such beautiful news!!! Congradulations CF community!!! Definitely one for the books!!
As a subscriber, before you started taking the medication you were coughing soooo much and so hard. Felt so bad for you, but amazed how much of a fighter you are!! You definitely can see (for us watch) how well you improved. You can see theirs a spark and pep in your step. Definitely can see the difference now from back then. I'm happy for you!!! Keep at it Mary!!! 💙⭐💙
🌼hope you're having a great day🌼
Yayyy! I’m so happy for you and all the other CF patients that will be able to benefit from this medication!
I teared up right on with you both at Peter’s reaction. That’s amazing and I’m glad that it’s approved finally!!!
Mary, We are so grateful you're with us always xx
Great news, Mary! Sending love and light your way!
I saw the announcement about Vertex on tv this morning and got so excited for you and all the cf community. I am soooo happy for you all! I keep thinking about it off and on all day and the excitement comes right back. I know we’ve never met but you guys feel like family to me and I love you both...and of course Ollie!! God Bless you all!
What an incredible, amazing, stupendous gift this day is!!! No further words needed. Just a joyous grateful day.
WOW! What an INCREDIBLE moment for CF patients. It’s been so cool to watch your journey with Vertex the last 12 weeks. And I pray that many will get to experience significant improvements in their health just like you have Mary. God is SO GOOD!!! ❤️
hi mary peter and oile boy i am so happy for you i shared this vlog with a few people who i think love your vlog you look like my cousin when she was younger once again congrads
Such wonderful news for the CF community.......God Bless to those needing this!!!!!
Thats amazing Mary!!! Im so so happy for you 😊😊😊🤘🤘👍👍👏👏💖💜💙
OH MY GOSH!! WHAT WONDERFUL NEWS!! I WAS SO CONCERNED ABOUT YOUR HEALTH WITH ALL THOSE INFECTIONS BEFORE. I AM SO SO GLAD FOR THIS MEDICATION FOR YOU. NOW THAT OTHERS WILL BE ABLE TO GET IT I AM OVERJOYED!
So much love Mary. Those days when good news fills your heart to the point where it leaks from your eyes are truly special.
So happy for u mary !!! Love watching u guys!
I admit....I hit teary eyed and cried when you first said the great news💜💜💜
I've had a roller coaster of a month but this video brings so many happy tears. As someone who depends on medications to survive and been involved on the clinical research side of things as well, I know how long and hard the process is to get these treatments approved and the risks people take in trying new medications. Thank you so much for sharing this wonderful news with us.
Great news. I cried myself. How amazing. God bless you and your husband. You both are awesome!
Oh my goodness. How exciting!!! I’m crying along with you!!!!!
Wow Really good news. Have no words am SO GLAD for you and all CF patients. ❤️🙏🏼❤️🙏🏼❤️
So happy for you guys and all CF patients. Praying this helps all CF patients in some capacity and Thank you to all who worked on getting this to market
I feel your emotions Hannah, my nephew James Jackson III aka Trey, 24 years young he is my twin sister's first son. Received this GLORIOUS news yesterday, and as I am typing - he is right now at UTSOUTHWESTERN in Dallas, TX receiving his very first treatment - please say a prayer for him, as you know this has been a daily struggle for him. We knew one day, it would happen. We are just so very blessed that it happened when it has. Yes we serve an AWESOME GOD!
Such amazing wonderful news!!!! I know how much Vertex has helped you Mary, and now so many more CF patients will benefit from this breakthrough medication. God is so good!!!! Sending my love and hugs to the three of you, see you tomorrow!
Praise the Lord!! Thank you for sharing your life with us these last several years. Watching your journey day by day we really know what you’re going through and how poorly your health had gotten. It has been such a blessing to see how much better you are on this medication. We can really join in celebrating the FDA’s decision today, and understand how important it is. Thank you.
This truly is an answer to my prayers for all the CF patients out there. My heart is bursting with joy & I'm thanking God. The only part of my prayer left is that it's made available internationally. I sadly lost a friend to CF back in 2007 at the age of 27. It fills me with joy to see all the progress that's been made in the CF world since then. I want people with CF to be able to enjoy living a "normal" lifespan & not die young like my friend did.
I’m so happy for the cf community! This is INCREDIBLE! Blessings 😀
Yay! How exciting for everyone (90%) with cf!! Now I'm praying that they can find a treatment for CRPS. I've been dealing with this horrible disease since 2006. November is CRPS awareness month and we desperately need awareness as it took 9 years to be diagnosed and most medical professionals have never even heard of it. Lots of love to you both! You're so strong, Mary!
I saw this and just started crying. Just the title and it hit me so hard. I’m so happy and grateful and excited and I’m just overwhelmed.
A day of joy - so happy for you and the many other persons living with CF. 10% to go!
I am so happy for you, we donate to CF and it's nice to see the turn for the good! Keep kicking Butt hunny!
Sooo very excited for you and those suffering with CF. I don’t have it nor do I know anyone that has it but boy what a huge breakthrough.... ❤️❤️
I received the news yesterday also about the approval of the FDA for the TRIKAFTA! I am so excited about this for all the CF patients that this will make such a positive impact in their lives. My husband and I go to the CF Clinic on November 6th to see his CF Team. I am so excited about the opportunity that my husband will now have available to him. Can’t wait to share in this experience as well. Love you all and Mary all I want to say is thank you for continuing to be such a driving force and a positive influence in our lives. ❤️❤️❤️
Wow! Wow! Wow!!! Hooray!! This is amazingly good news!
What a huge blessing that the triple combo was approved! That will be an incredible blessing for a huge portion of the cf community.
Such amazing news, so many CF patients lives are going to change now..... for the better.
I am so happy because of that❤❤❤❤ this was one of the greatest news I have ever received this year.
This is amazing! I found your blog out of curiosity because with my 3rd child I found out I am a CF carrier! None of my kids have it thankfully but this makes me worry less about my grandkids! ❤️❤️❤️❤️❤️
Better With The Irish Your children, as well as you, can do IVF to ensure that no child is born with CF. Although there is treatment this is not a cure. The cost of treatment will also be an issue for access for many CF patients. Sure most CF patients would encourage you to prevent a child getting CF in the first place if possible.
I tought that both parents have to carry the cf gene for the child to have it?
All positive thoughts and prayers have been answered Yeah for you Mary and for all others with CF Im crying happy tears with you. People really do have a heart 💗 and God is good!!!!
I started crying so much. I’m so thankful!! I really hope this medicine can help so many people like it does you!
This is amazing news. Cf has come a long ways and will continue to. Glad your feeling better also.
Tears of joy with you, friends.
Mary, I am beyond happy for you and all the cf patients that can now get this medication. It was sweet of you to mention my name as a donor. I am glad I can help in some small way. Thank God for all the researchers, doctors and all that made this medication available to those born with this unfortunate disease. Peter & Mary, you are the sweetest couple and have been given a gift to spread awareness and hope for those with CF. Sending you hugs 🤗💗
So excited to hear this great news!
i am very happy for CF patients all over the world. love you guys. thanks to GOD for so many blessings.
Yay!!!!!😁
You're the only person I "know" with CF, but I am so happy that this drug is available to improve the lives of CF patients.
Seems quite miraculous.🤗🥰
Thank you for sharing! And for feeling!
That's wonderful the medicine was aporoved You two are awesome God Bless
I am so happy for all of the people needing this medication. It's truly amazing!!
Woooohoooo!!! 👏😃 So happy for all the folks with CF that will be able to benefit from this!
God Bless you Mary and Peter and all the CF patients out there. Praise God and all the people who had a hand in bringing this medication to all the people who need it so very much. Much love to you two. You are such an inspiration to everyone no matter what our circumstances are. 💜💜💜💐🌞
OMG Mary, I am crying into my Lean Cuisine Meatloaf and Potatos! I am so so so happy for you and all the CF patients now and in the future that will benefit from the Vertex. Happy dance and praising God for his touch on your life and lungs👱 Love your Sermons Peter.💒
15 seconds in and I'm in tears. cool, very cool...
also, the moment I saw the news about it, my mind went "OH MY GOD MARY" and then i cried
Thank you so very much for sharing this and for explaining what a huge amount of work, effort, money, and care can go into new medication! Kind regards!
Awesome news thanks to all the researchers 😊😊😊
I cried. So happy this has happened. Will help so many people.
Great news! I feel you had a part in this news. You never know. Your vlog reaches so many people. Love you both an Mr. Ollie‼️❤️❤️❤️
I work at habitat for humanity (in California)! Love that you’re supporting families by shopping at the store. Also very excited for the CF community on this major breakthrough!
I am so excited!
😱😱😱 wow I am absolutely so Ecstatic about this! So so so happy! My step sister though doing great for having CF can use this and hopefully postpone the damage in her lungs. So happy for everyone with CF! Keep fighting! 💪🏼 PS the Squatty potty part made me crack up, thank you! Love you!
I'm so excited that the drug has been approved and more CF patients will get to experience the wonderful changes you have felt.
My heart is so happy for the entire CF Community and the fantastic news of the FDA approval for the triple combo Vertex! I want to also thank EVERYONE who made this possible and the ones who continue to support further research. Thank you Lord, for so many who have not given up. I may not have CF, but I have a chronic illness that has no cure and my children have a genetic disease that has no cure as well. I know the feeling you have right now as I received the news on the 8th, that the FDA has approved a treatment that may help change my children’s lives in a major way. It is not available for use until they are 18, but I imagine what this will do for them and the future of their lives. I am crying happy tears for the CF Community as I did on the 8th for the EPP Community. GOD IS GREAT! Huge hugs, love and prayers 🙏 coming your ways as always. God Bless! ❤️🤗💪🏻
So happy to hear of the FDA approval! Patients like you are the reason we work towards new medications making it to the market! I work in a fairly small research site in Iowa and we do it for the patients not only in our studies but those that will benefit in the future! Hope many more will continue to feel better with addition of this new ground breaking drug
I never thought I would experience this day w/ you all.
I'm humbled...I'm amazed
God is so good All the time
Mary, you had a lot to do w/ this new reality, the funding, the fight you have fought every day of your life. You are a part of that team that made this happen!!
And Peter, Peter, there are no words, nothing that would Express the love, encouragement, & support you have given♡
And Preach??? THIS MAN CAN
P R E A C H!!
I LOVE ALL OF YOU♡
Yay!!!! That’s amazing news!
Omg! It brought tears to my eyes of happiness... I have a 8 year old son with cystic fibrosis. And the idea of having a great medication to help out is mindblowing. Im happy for you. And hopefully we get to hear something soon for us
When I read the news about it being approved by the FDA, I immediately thought of you!
So happy for you and all that this will benefit.
My gson has cf also & we watch ur road together. U are a wonderful loving couple who deserve to stay well. He finally has hope & we received the best Christmas- Bday present EVER by hearing of the FDA approving this drug. Bless u both & all the happiness to u
That's amazing thank you to everyone who made this drug available for the people in the cf community. My love and hope and support go out to that 10% that can't use and I pray that there will be something for you out there soon.
I burst into tears when I saw the news. So exciting!
You guys are so bless 🙏 hugs and prayers are with you