Toward a Cure for Cystic Fibrosis: The Best Story in Medicine | Rebecca Schroeder | TEDxCoeurdalene
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- čas přidán 5. 07. 2024
- Rebecca Schroeder has a background in chemistry, and a child with a rare genetic disease called Cystic Fibrosis. In this video, she describes the last miraculous decade of medical research and advocacy, which has transformed the lives of many living with cystic fibrosis. Progress is FANTASTIC, but we won't stop until it's done...and 100% of cystic fibrosis patients have a cure.
Rebecca grew up in small-town Kooskia, ID and earned degrees in Chemistry and Spanish at the University of Idaho in Moscow. Rebecca's life was turned upside down in 2007, when her newborn son was diagnosed with a life-shortening, rare, genetic disease called cystic fibrosis. Her background in chemistry facilitated a fascinating deep dive into the world of pharmaceutical research and drug development, which recently yielded a massive breakthrough in treatment of CF. Rebecca continues to be a passionate advocate for those living with pre-existing conditions in her volunteer work with the Cystic Fibrosis Foundation. When Rebecca isn’t in Coeur d' Alene with her husband Brock and son Brady, she can be found organizing citizen volunteers in every corner of the state as Executive Director of the non-partisan political organization Reclaim Idaho. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
The doctors are confident my newborn son has CF. This video has given me the first glimmer of hope since I was told. When there is a will, there is a way!
Thank God they know more now.
One of the worst feelings I’ve ever felt was hearing my son had it.
He’d just been born in 2008, and he couldn’t keep food down. He also wasn’t passing his first bowel movement, which is an issue called meconium ileus.
Long story short, my son was flown to Miami Children’s Hospital from West Palm Beach, Florida’s local hospital to be operated on.
As we waited, at the time I was a smoker, so I went outside to make calls, update my family and pace.
When I returned my fiancé told me that the surgeon said it was a successful surgery, that they also took his appendix out(incidental appendectomy), and that we’d hear from the St. Mary’s Cystic Fibrosis clinic since he had CF.
I fell to the floor like someone hit me with a train.
My son’s mother had no idea how bad the disease was until she saw her son’s father fall in place, sobbing.
Have no doubt, CF can be terrible. It’s taken too many from us.
But, our children born now are much, much more likely to bury us than we are likely to bury them.
CRISPr is incredibly important to this, but so were things like Kalydeco, The Clean Air Act of 1970, and other countless hours of hard research from dedicated doctors and researchers.
Science, not prayer, not faith, not desire, but science is what will stop CF.
Vertex Pharmaceuticals Triple Combination drugs have had a miraculous effect for my wife. Currently age 48, her lung function is 15 points higher than when I met her 13 years ago. Unheard of!
I believe CF is really close to being cured especially since Trikafta has come out. When I was born with CF the life expectancy was 33 and now it’s in the 50s which is crazy to me. I am 18 now and man it’s been a journey with CF
Thank you for remembering the last 10%. Wonderful speech.
I have CF and will turn 68 yrs old in a few weeks. I went to college and then, law school. I've retired from a career as an attorney. Believe a cure is on it's way. Also, take your meds & treatments as you believe that Pa Pa God will heal you through prayer - Jesus is our healer! Keep believing & keep praying in Jesus name, Amen!
amen!
Buy chlorite quartz crystals you resonate with. I have CF and find that it helps m congestion tremendously. It would not hurt to try. Our hands are connected to all our organs due to meridian/ chi channels. 🌞🙏🌚 Wishing you well and many blessings
Remarkable story told wonderfully. Thanks Rebecca and Brady!
My best friend has CF this is giving me more hope for her.
I started Trikafta in February of 2020, and it has been incredible.
That was brilliant! I am so happy for all the people who have benefitted from your work!
It is so sad that only some people with CF benefit from Trikafta. In the meanwhile the rest who can't afford it will suffer.
This is just amazing, Rebecca ❤️
This whole talk is good! Yet makes me so sad. My daughter was born in 1989. Yes! The same year they discovered the gene for CF. Now they have gene therapy.
Very happy your son is doing well Rebecca. My son is 13 with CF and unfortunately here in South Africa we don't have access to Trikafta. How do one explain that to your child.
This is so inspiring!
My poor brother was years just a few years away from benefiting from this:( we had talked his whole life about finding a cure about growing up together im very happy no other brothers or sisters and parents have to see their loved ones die at such a short age
Great communicator.
I'm here because I've watched the trailers for 5 feet apart and was confused on what cystic fibrosis is .
My 3 year old son has it. (Long story short) Cystic fibrosis is an inherited disease caused by a gene malfunction. Basically you’re body can’t regulate salt and it causes the mucus in your body to be extremely thick and most people don’t realize you’re entire body is lined with mucus and when normal people get sick you just cough up the mucus but with cf it’s too thick. Over time the lungs become scarred from the mucus and eventually causes lung failure. Now some people with have more digestive issues than lung issues and why is that I don’t know but it’s a life long disease but they’re coming out with new medication all the time
Beautiful talk, we appreciate your hard work, along with the thousands of others working towards a cure. However, let’s not give people the impression that these drugs also don’t give some CFers side effects worse than the CF itself does. We need a safe cure not just a cure.
We are living in exciting times
One day 🙏🏻
Is there any treatment for cystic fibrosis in the pancreas?
Please patient across world 🌎
I have cf and i have lived with it for my whole life (11 lol)
hang in there buddy
Believe a cure is on it's way. Also believe that Pa Pa God will heal you through prayer as Jesus is our healer! I have CF and will turn 68 yrs old in a few weeks. I went to college and then, law school. I've return from a career as an attorney. Keep believing and keep praying in Jesus name, Amen!
@@Synder619 amen!
Where can I donate
Great
Are there gene therapies for people who have had transplants so that they do not need to be on so many drugs to stay alive? Thank you for this talk, I found it informative.
not yet my fellow friend... it's even harder after the transplantation
Can’t stop, won’t stop until the cure is found for all - FU CF!😬💪🏼
Interesting, but i think it takes at least years to see the side effect and the accuracy of the medications.
These drugs are around for 8 years now. Effect and most of the side effects are pretty well known by now.
@@paulmetdebbie447 I think she's referring to a potential cure.
Side effects are seen very soon.
No vaccine side effect has ever been seen past 6 weeks, ever.
On other medication, it’s rarely when that long.
What is seen happening over time is a decline of efficacy.
Also, CRISPr isn’t something that would take time to see side effects.
If they exist, they’d kick in very fast.
Pretty sure this Ted Talk was finnaced by the Vertex Laboratory. Also, all the data contained in the clip has no reference to the source of it, its a shame for Ted Talks to allow this talks but I guess they need to get money from somewhere.
i have CF and I'm one of the first who can try the newest Medication in Europe! Good Luck Lil Brady! ❤ keep on going lil Brother ❤