I'm from Minnesota, and I have cystic fibrosis. Cystic Fibrosis is a genetic disease that makes the secretions in my body thicker.That's why my lungs and sinuses get full of mucous and infected.
your age group, your peer group, because as you likely know, as we get older, our sleep deteriorates, and so you want to have a group that you compare with. cystic fibrosis. But itís very potent and works exceptionally well.
the night i met them they were at a gala to accept the breath of life award for their amazing contributions to the cystic fibrosis community and to research for finding a cure and after speaking with them i knew thati had to read the book so reading about their struggle their thirst for life and their desire for normal lives
on paper and so it's hopefully going to gain a give empathy to you to understand all the other people that are dealing with cystic fibrosis in particular but other illnesses too so um as we mentioned the power of two attwin triumph over cystic fibrosis is our book that is available on amazon.com
or on our website stenzeltwins.com we do give a portion of our proceeds to cystic fibrosis research so the advancements in this disease can continue we thankgoogle for inviting us we do have some materials on the table there brochures if you're interested in purchasing our book
day we talk about our illness community we grew up with many friends with cystic fibrosis at camp and other organizations and that those people were really didn't always survive so we knew that we needed to love them and care about them and be good friends with them
have kathy or danielle come to speak about the cystic fibrosis foundation and we have a really exciting event coming up the cystic fibrosis foundation i'm sure you are all familiar with different foundations like the cancer foundation there's many different
And every part of your body feels tender to the touch. I had cystic acne. I had so many problems with weight gain.
And in season two of "My Last Days," I met a young woman named Claire Wineland who was a YouTuber. And Claire Wineland had cystic fibrosis. And I told her story in the second season of "My Last Days." And her and I became very dear friends, and she kind of became like a little sister to me.
So these switches are kind of really important. The faulty gene in cystic fibrosis, it makes a protein that kind of shuffles salt in and out of your cells so you don't make mucus properly
It's all wasted. The end-user can't easily understand what that data means and can't integrate that beneficially into their Rare recessive diseases like cystic fibrosis, Tay-Sach's disease, sickle cell anemia.
it's a story about our two donor families so i'm just going to give a little bit of background what is cystic fibrosis for those of you who are not too familiar with it it is the most common genetic recessive disease it affects primarily caucasians about 30
they came from japan and germany and we were born shortly thereafter in 1972 and diagnosed with cystic fibrosis at birth and at that time they were told that our prognosis or our lifespan would be about 10 years of age and certainly that has changed significantly
at the time was uncontrollable this is just an example of the creative ways that cystic fibrosis can open up doors to artistic expression this is a website called the breathing room which is a place of artistic expression through poetry and
called the breathing room which is a place of artistic expression through poetry and photographs for people with cystic fibrosis this is just one example of isabelle's picture where she is instead of having a luxurious bubble bath she's bathed in medical equipment
and we were featured in people magazine um and some other publications and news opportunities to help promote organ donation and cystic fibrosis awareness some of the challenges including the endless amount of marketing i think there's never an end to that and promotion taking a lot of time energy and a learning curve because obviously this is not
cystic fibrosis in particular but other illnesses too so um as we mentioned the power of two attwin triumph over cystic fibrosis is our book that is available on amazon.com or on our website stenzeltwins.com we do give a portion of our proceeds to
I remember the players were all milling around on the field now. My son was diagnosed with cystic fibrosis at the age of 2.
I have to fight crying each time. and cleared an infection in a cystic fibrosis patient, and we're hopeful that that will become a standard part of the treatment.
And my liver gets full of stones. There's no cure for cystic fibrosis yet. But there's a lot of treatments that I have to take to stay healthy.
And I was so impressed to see how they create tools that fit in perfectly within people's health needs. I also asked them to keep cystic fibrosis in mind because I hope that one day they can create something to help CF patients all around the world.
Oh, there's a gene for Alzheimer's. It's the gene for cystic fibrosis. It's the gene for obesity.
And I love especially sharing about the skin. Because so many people with cystic acne, they end up taking things like Accutane and all of these things. And I have not done any of that.
It's all wasted. The end-user can't easily understand what that data means and can't integrate that beneficially into their think that it's just cystic fibrosis or it's just Tay-Sach's disease or it's just the dilated cardiomyopathy that I mentioned.
and achieve the lofty goals they set for themselves i wanted to bring anna neesa to google because i knew that their story was not only relevant to people living with cystic fibrosis but to everybody that struggles to attain their goals and when i read the power of two i stopped letting myself give up not that i did it all that often but
particularly with a struggle like an illness we wanted to share about the influences of our cultural heritage which i feel are quite unique in cystic fibrosis it's a predominantly caucasian disease and since my parents are immigrants from japan and germany we wanted to share that aspect
and we're biology majors and we wanted to see if we could do it and so we mainly wanted to write a book so that we could raise awareness of cystic fibrosis and organ donation this is a very rare disease only 30 000 people have it if we don't write about it if we don't talk about it who will
have kathy or danielle come to speak about the cystic fibrosis foundation and we have a really exciting event coming up foundations who are doing research cystic fibrosis foundation is actually the only foundation
have kathy or danielle come to speak about the cystic fibrosis foundation and we have a really exciting event coming up who is doing research for cystic fibrosis so as they were saying there's only 30 000 people
been through some challenge. And that was a young woman that lives life with cystic fibrosis and a buddy of mine that beat cancer twice. I had no script, no intro, no fancy editing software.
So these switches are kind of really important. There are a few diseases that we know of-- things like cystic fibrosis is a great example-- that we call the Mendelian diseases.
into giving us the best life possible with traveling and camping girl scouts hiking and we talk a lot about that as well because cystic fibrosis is a chronic illness we did face many hospital stays as children we had probably several hospital stays per
how i just still wanted to see and enjoy the outdoors so as we progressed i think the good the good thing about cystic fibrosis is that it's the kind of disease where you can sort of think about taking the bad part out and putting in a new and that was the idea of transplantation
and and a portrayal of how illness was just one component of our of our memoir so now i would love to have kathy or danielle come to speak about the cystic fibrosis foundation and we have a really exciting event coming up couple of events thanks so much i'm danielle and this is kathy
And when you have that, you can kind of circumvent. We have genetic, which is things like cystic fibrosis.
I'm 16 years old. I'm from Minnesota, and I have cystic fibrosis. Cystic Fibrosis is a genetic disease that makes the secretions in my body thicker.
and made it the best day of my life. I can't forget to thank my amazing medical team at the University of Miami Cystic Fibrosis Center-- my doctors, my nurses, my therapists, my social worker, and especially , , and Andrew for always helping me to stay as healthy as possible and who introduced me to Make-A-Wish.
your age group, your peer group, because as you likely know, as we get older, our sleep deteriorates, and so you want to have a group that you compare with. And then beyond the whole area of cancer there is many conditions like cystic fibrosis, weíve known the gene for many years, but finally have a breakthrough.
And then about voting with big Pharma is about voting for the future health of people with heart disease, diabetes, cystic fibrosis. Mhm. All these things that kill people that I'm trying to find cure for. And that's all it is.
It was terrifying to me, so I assumed it would be terrifying to her. What I did was write a children's book called "Mallory's 65 Roses." 65 roses is what kids hear when adults say cystic fibrosis. We read it to her class every September, I gave it out to all her friends, and I sent it with her when she went to camp.
And I just want to have just-- yeah, we just watched it. I just want to have a quick moment of silence just for those who are dealing with cystic fibrosis and other illnesses, those who have lost their lives, those who are fighting the fight right now.
And for you just to be such an incredible ally in the space, it means so much. For example, I developed this app related specifically to cystic fibrosis and other illnesses.
Now, this embryo was not brought to term, but it would have cured this would-be child. And so of course they're looking at a lot of other heritable genetic disorders that they want to cure-- cystic fibrosis, Huntington's disease, hemophilia. These are diseases, heritable genetic disorders that have only one or two genetic coding problems that could be fixed by CRISPR.
Is it always about our own emotions? In another two projects, we're working with young people in one that have cystic fibrosis or diabetes Type 1, in the other one that have asthma.
I will ask five or six requests every week to give your time to cook for cystic fibrosis, heart, battered woman, this.
really here to hear anna and issa thank you when i first met anna and isa it was before i'd read their book i knew them as the twins that had written about living with cystic fibrosis and surviving lung transplants two different people had recommended the book to me um one of course being my mother and
but because of advancements in medical science and and treatments through the cf foundation's advocacy the average life expectancy today is in the late 30s and the primarily problem primary problem in cystic fibrosis is that the mucus the body makes is too thick and that causes congestion in the lungs that
have kathy or danielle come to speak about the cystic fibrosis foundation and we have a really exciting event coming up we call an orphan disease and that means that we don't get funding from the government so the cystic
I also host a morning talk show here in New York, "Boomer and Gio." I've been doing that for 12 years. And I have my own nonprofit organization, The Boomer Esiason Foundation, fighting against cystic fibrosis. That has raised over $200 million over the last 25 years.
It was 1995 when the call came from the genetic counselor telling me that our daughter, Mallory, had cystic fibrosis. It would take a few minutes before I came to understand that the wailing noises that I was hearing were coming from me.