Today in Henrico – Terri Quinan, Cystic Fibrosis Foundation, Virginia chapter

Terri Quinan, executive director of the Virginia Chapter of The Cystic Fibrosis Foundation, joins host Tara Gray to discuss the organization and those it serves.     (adsbygoogle = window.adsbygoogle || []).push({});

(The transcription below is provided through an automated service and may contain some errors or omissions.)

Tara Gray – I'm Tara Gray and today in Henrico, my guest is Terri Quinan, executive director of the Virginia chapter of The Cystic Fibrosis Foundation. Welcome, Terri.

Terri Quinan – Thank you so much, Tara. I appreciate being here with you.

Tara Gray – It’s my pleasure to have you come on and share all about Cystic Fibrosis Foundation. You've been there six years. We'd like to start off with a little bit of information. What is cystic fibrosis?

Terri Quinan – Yes, cystic fibrosis is a rare genetic life shortening disease that affects every organ in the body. It makes breathing really difficult. Some people say that disease say it's like breathing through a narrow straw. In people with CF, a defective gene causes a thick buildup of mucus in the lungs and the pancreas and other organs.

What happens with that, though, it causes a lot of mucus to build up in the lungs and clogs the airways and traps bacteria and it can lead to life threatening lung infections. And 65 years ago, most children did not live long enough to attend elementary school if they had CF. But thanks to the foundation beats research and care, people with CF are now living into their 40s.

Tara Gray – Okay, let's start off with the website. So I'd like to have you. . . let's cover the website and then let's share all the social media.

Terri Quinan – Yes, please go to www.cf.org. That has an incredible amount of information about the disease about what the foundation does to help treat and care for people with with the disease and how we're on the path to a cure, or finding a cure for cystic fibrosis.

Tara Gray – It's a wonderful website. And it shares all of your social media.

Terri Quinan – Absolutely. So the Virginia chapter and of course, we're a nationwide organization, but we are on Facebook, with the Virginia chapter and on Instagram as well. So just look up Cystic Fibrosis Foundation, Virginia chapter and you'll find this all there.

Tara Gray – Okay, there are 70 chapters, and I guess what have you guys refer to them as branch offices? It's Is that correct?

Terri Quinan – That's right.

Tara Gray – Okay. It seems just for me, as a visitor the very first time that I logged on or that I was on the main page there, it seems very easy to find your chapter. So one of the first things that you will see as a visitor on the website is, you find your chapter based on location.

Terri Quinan – Correct. That's right. That's right.

Tara Gray – All right. So after you do that, then I guess obviously you're usually I guess directed to a branch office.

Terri Quinan – That's right. So you can go to the the office a, it's, uh, obviously the CFF.org. website has, you know, the global so to speak information and then when you dig down into the the chapter level, you'll find the information that we have there. It lists our board of directors and the events that we have going on for our chapter to raise money and awareness in Virginia.

Tara Gray – Okay, you talked a little bit about what cystic fibrosis is. I would like to go back a little bit. Some history. The foundation was formed by parents in 1935.

Terri Quinan – That's right. Yeah.

Tara Gray – Would you like to elaborate on that?

Terri Quinan – Sure, sure, yes. And we were founded in 1955. And we are certainly the world's leader in the search for a cure for cystic fibrosis. And just like Tara said, the foundation was started by parents who are desperate to save the lives of their their children. And in fact, their main focus, in the very beginning was just to get doctors focused and involved in CF care because there really wasn't like a specialized group of doctors who were caring for children with CF.

So from these parents, their relentless and impassioned determination to prolong life, resulted in tremendous strides for for their children with cystic fibrosis. And in fact, this year, we're celebrating 65 years of accelerating innovative research and drug development, as well as advancing care and advocacy. Virtually every cystic fibrosis drug therapy available now was made possible because of the foundation and its supporters. But still, we believe no one should have to die at a young age. And we're not going to rest until we have a cure for all people living with cystic fibrosis.

Tara Gray – On the website, you can read for yourself the history in it is incredible when you are scrolling down the page and you start at 1955. And you see that in 1989, the median predicted age of survival was 29.

Terri Quinan – That is right. It's incredible. And still now the median life expectancy is now in the 40s. And you know, I think you and I and everybody listening would agree that that's not, that's not, long enough. I mean, we're very proud that we've gotten as far as we have over the past 65 years. But, you know, we we want to get to the end. We want to cure this disease, so everyone is going to be able to live a nice, long life.

I mean, the beauty of where we had, you know, where the life expectancy keeps inching up, you know, now our population, we actually have more adults than we have children, which is just absolutely amazing. And they're going on and they're going to college and they're getting married, and they have real grown up issues like paying mortgages and paying bills. W’ere really happy that they have that problem, you know, that they're there.

Tara Gray – Yes, that's incredible. Research, care and support are the three main areas that the nonprofit focuses on. Would you like to talk a little bit about that?

Terri Quinan – Sure, sure. So, like I may have mentioned just a bit earlier, that we really are on the forefront of some innovative and cutting edge research for for cystic fibrosis. I mean, we are, we do everything from working with pharmaceutical companies to develop and conduct clinical trials for their drug therapies, which have actually been quite, we've made great progress there. We actually have four drugs on the market that people with CF are taking that are that are what we call correctors. And they work at the underlying cause of cystic fibrosis. So they work at the cellular level, basically kind of correcting a defective protein within the cell. And that has dramatically extended the life expectancy of our folks with with with CF. Just last year, a drug came to market was approved by the FDA in record time. It's called Trikafta. And there are actually 1700 mutations of cystic fibrosis gene mutations. And this drug helps those folks with one copy of the most common mutation. And it is expected to help up to 90% of our population, which is absolutely amazing. And which means that the life expectancy could get up into, you know, the 60s and 70s. Because of this, you know, something very, very normal.

Along with, apart from drug research, you know, we're getting into RNA therapy and gene editing and replacement. We're really excited about that. I think that's, you know, really the only way we're going to cure a genetic disease. For our care we have we established an amazing care model. When the foundation was started and we have about 120 CF care centers across the country have four adults in pediatric patients that are just phenomenal. It's it's a very complicated disease, and we have a lot of doctors and specialists working in these care centers that are really treating the person, you know, mentally and physically I could add in there as well.

And that has really helped extend the the life expectancy of our patients and of course the quality of of their lives. It has really, really helped.

Tara Gray – Right, okay, the ways to donate or get involved now, I'm assuming they're different than before. Would you like to talk about ways to donate ways to get involved? Some donate options. And then it goes into other ways to give. Would you like to just kind of talk about how COVID has affected that and then talk a little bit about ways to donate?

Terri Quinan – Yeah, absolutely. So I'll tell you about how COVID has affected the foundation. So and I'll kind of start with with with this, the foundation and the CF community, which by the way, there are 30,000 children and adults in the United States with cystic fibrosis and about 70,000 worldwide. We're certainly used to virtual interactions and social distancing. And I'm not sure if you're aware, but we have a really interesting infection prevention and control policy for the foundation where we can only . . . it's recommended that only one person with cystic fibrosis can be in a building at a time. That's not a room. That's a building and when we have events or we get together outside, we've recommended all along that folks stay at least six feet apart from each other.

So I like to say that we invented the six-feet apart rule for people before it became, quote unquote popular with with our current pandemic. So we're glad to have the CDC recommendations of public social distancing and working and schooling remotely, because the CF community is at greater risk of developing serious illness from COVID-19 if they become infected because of their underlying lung disease. So, you know, other ways that were how COVID has affected us is, you know, our mission is not slowing down. Our high quality care that we provide for our community is not stopping. But there has been a significant slowdown in science many labs are, are closed and many of our clinical trials had to be stopped but the CFPB is continuing to push forward with our pursuits as we continue our conversation with our scientific partners.

Our foundation research grants based on milestone attainments will be delayed some since facilities are closed or or are operating at lower capacity. But we're making sure our scientists who we partner with are feeling supported by the foundation and that they know will be standing by our commitments. And luckily there has not been a slow down or shortage of CF medications due to COVID-19. COVID has turned our care model on its head, as it has done for the whole medical community where our community is not going to clinic visits, but they've moved to telemedicine and it has certainly, COVID certainly expedited our telemedicine and appears to be doing doing well. I mean, we're providing homes barometers to all of our patients, and we've only just been able to distribute to them, 2500 so far nationwide, but that's because production is a little bit slow. And hopefully that that will be ramping up. And we're planning on providing neonatal scales for our newborns. And we're looking at how to recapture data or capture better data by using wearables and connectivity through mobile phones. So that's going to be really, really cool.

I know we’re probably limited on time, so ways to get involved with the foundation. . . You know, obviously, we're not conducting any in person events through 2020. And so our volunteering base looks a little bit different, but we still encourage people to volunteer and get involved. We'd love people to become advocates and sign up for alerts and getting in touch with their local representatives. You can do that by texting “Fight CF” to 52886.

We have a wonderful young professionals initiative called Tomorrow’s Leaders, where we provide professional development seminars, virtually and now and networking with like-minded individuals who are interested in making a difference in the lives of folks with CF. We have committees who are still doing a lot of planning for our virtual events this year, and hopefully, you know, our in person events next year, and of course, we'd love for you to participate in one of our fundraising events. We're still fundraising, we're still holding these events. They've just looked a little different. We're seeing we're reimagining them and there is something for everyone.

If you could cycle, hike, walk, eat from some great restaurants and even drink some of the best local craft beer in Virginia – we’ve got it all.

Tara Gray – That's great. That's wonderful to hear. Up in the top right hand corner is the donate button. Obviously you can set your own amount but there are set denominations and then like I said, it's, it's set up to where you can do one time, you can give once, like you mentioned give to a walker, and then you can do monthly. So it's very simple. You just fill out the chapter and your name and payment information. And then from the comfort of your own home, you can help Cystic Fibrosis Foundation. Thank you so much, Terri, for talking with me today. I really appreciate this.

Terri Quinan – Thank you so much, Tara. This was so wonderful to to talk with you and to spread more, you know, information and awareness for the foundation and our population. Thank you.

Tara Gray – Of course, happy to.