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JDRF 091816

Sep 16, 2016|

AN INTERVIEW WITH KARIS TSOLOMITIS, DEVELOPMENT COORDINATOR WITH JDRF AND GREG SMITH, JDRF WALK CORPORATE CHAIR, ABOUT THE WORK JDRF DOES TO CURE, TREAT, AND PREVENT DIABETES AND ABOUT THEIR FUNDRAISING WALK.

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Automatically Generated Transcript (may not be 100% accurate)

This is metro scope and Entercom radio Portland public affairs program I'm Gary blocks of the goal of JD RFO is to improve lives and cure type one diabetes creating the world's without type one diabetes. And on the show this time we're gonna find out how JD RF is doing that and what you can do to help. The some of the so I'd like to welcome Kara so I mean he's the development coordinator with the GDR rest. And also Greg Smith the GT RF. Walked corporate chair what about the scope. Thanks for us they scared so the big block for GDR after he's coming up your crystals when the walked it is. So our rockets coming up next Sunday September 20 fanned out at the north broad acre lawn at Portland international raceway. And registration opens at 9 AM the walk starts at 10:30 AM. It's not too late to get something that is definitely not too late to get sign up if you wanna sign up free now you can go to walk dot JD arraf dot or. And just click register cool. So it's the weather's going to be perfect or 72 and sunny thanks her on the show week. Oh yeah she's those who is a big big part of duty or if she is she is actually our watch and see this here. Very cool so low can we expect at the walk this year. Senior expects all new types of entertainment really great family fun we've got bouncy house this this year. PGE is coming back we'll be massive kids carnival corner and they will also be. Our sponsor for a V one. They're going to be doing special goodies for them as well as special really really fantastic face painters. And we've got some great entertainment like music not oaks is gonna be. Can we really great time cool. So that if one party yeah wells a walk it is and it's a big fund raiser for GDR if it is it's one of our largest fundraisers throughout the year could. So it's maybe talk about what GT RF is. Great what does TD Europe. For the leading international. Research for type one diabetes. In in search for a cure Margolis who. Cure or prevent and treat type one diabetes. I'm so every dollar that comes in where one of the most efficient. Nonprofits. In the world I'm actually I'm. Forbes kind of preferred list for how efficient we are with that money in Asia censor every dollar goes to. Research that's pretty remarkable yeah fantastic it's that's a definite highlight your head of the money guys you know that. It very proud of our traditional responsibility. So. We're out there trying to promote and encourage them scientific community. You know our own backyard for a hearing in order southwest Washington two. Really push forward. The progress towards secure you know we're we're going from every angle. With new research that's. Better treatments and impossible waste and re engineer this so it could possibly to reverse the contact point for people. They currently have it while. Throw affects more than one point 25 million people across the nation. So it's a it's a big impact. This is mostly GE RS mostly focuses on people with type one diabetes correct. Yeah we focus primarily on type one diabetes but in that effort researched a lot of our. Effects of our research have been spilled over into other disciplines and helps type to help kidney disease and help other you know functions on eye disease. So some some great. The results of come out of that as well. That's kind of helping everybody exactly the school so load type one and type two there's differences are it's all diabetes but there are two different. Species. That the I don't know I always say that kind of went together with that brought title diabetes. They are dramatically different. We look at it in a type one is virtually no insulin production from your pancreas and that. Relies on. Our bodies now rely on you know injections of insulin is through an actual injection through pump. It's a way that we have to continuously supply insulin to our body because it doesn't produce insulin as type one bad thing. I'm with type two diabetes you generally make insulin just not generally enough for your body type or your overall consumption. Oftentimes can be controlled with diet and exercise. And sometimes it also needs to have insulin to help control. You're both type one diabetics yes correct as in my wrist roll three time all dirty it's a it's a threesome of type one. So what animal what. What is been your experienced careful through the what's been your experience win re diagnosed in what's been your experience in your life. Thus far so I was diagnosed at sixteen almost ten years ago canceling my age. We don't know mapping we don't know Mac. But it's been amazing received just over of that equipment short ten years how technology has really changed and improved. Lives for people its pipeline and how much. Researches. Going on right now in communities are working together to help people live batter Aaron it's also. Treat those people that are cheering precursors for type one. It's been pretty amazing one example I like to bring up as well. When I was first diagnosed and into our research symposium. Where researcher for Sweden was talking about this idea of in capsule leading beta cells to create a functioning pancreas they would implant in the body and then just. A year and a half ago via site which is a company based in San Diego came out went. There encapsulation device VCL one which is a little package of precursor beta cells that are being implanted. In patients and their helping them to not have diabetes for eighteen to Tony for months which is huge. Mean that means no checking your blood sugar no injections no wearing an insulin pump no wearing a continuous glucose monitor. Which is amazing to see the progress and such a short period of time if you're looking at all of them. Rules and regulations that those recent studies have to jump through in order to get an idea even to come into human clinical trials. You just heard the technology's pretty amazing you know we've we think about. Even an iPhone the oversight only came out almost ten years ago let's go vastly different tone than what the newest iPhone is. And technology has really helped and so many different ways yeah you know they are sharks may diabetes. Easier to manage. In a lot of aspects it has. And then it's great especially for our parents. Blake talk about a continuous glucose monitor which is a little device that gets. I'll wire implanted under the skin and then it reads to say an iPhone or. On some other device and that's allowing parents to see their children's blood sugar every five minutes. Which allows our parents to have a lot more he is when their kids or school or if the kids are sleeping. They're not having to wake up every hour detector kits blood sugar. Instead they're allowed to this kind of sleep north through the night and bear CG down or continues glucose monitor law alarm and alert them if their kids Fletcher is going lower high. And that's generally amazing tool for our parents especially. Many of these new devices are happening because of funding from JD RF yes. Especially projects like which had about Vizio one encapsulation of bias I don't project was largely funded by JD era. Just very amusing to see. It's really let me turn to you and what when you're diagnosed and what's your experience been like sort of give away my age as well for 34. So. You can make a guest. Our right to say it has. I Nelson us fifteen so I'm nineteen years ago and I've seen the same. Kind of amazing hockey stick chart improvements. You know coming out and saying. Here take this one type of insulin is gonna last all day good luck. Hope he can bounce about the food you going to eat and also don't die. You know to go into a fast acting insulin Ricky capture carbohydrates. Really calculate what your going to eat and say OK right now I'm gonna eat this and now he couldn't cover it. And can do that multiple times a day and have a long acting basins ones that you could take. I'm now being moved into pumps and you know CGM street don't have. Check nearly as much but still it's it never takes a break you know that's the thing about ideas that maybe there are some better tools. But that disease is still is not going away in the diseases and change. Is constantly there can see the parents you know that's that's one of the pieces that I really taken a great opportunity and identity to. To be hope. To restore hope you know you you meet new parents that are diagnosed with there. They're kids that they you know the the kid doesn't get diabetes the whole family decide begins it's something that. As a bigger reach you know your your friends at school your nurses your teachers your. You know people at church whatever it whoever's around that child is now impacted by diabetes because it truly takes a village and community. To circle around that family and be supportive. Those parents spring if you think you're tired. I raise a child from you know first stage three where they Meese or sleeping through the night and have a little less monitoring he needs big they get that independence starting to build. With type one diabetes those parents. They have that and tell that are eighteen when they go it. As they still haven't but from a distance you know do the comparing never stops worrying problem no never end and with type one diabetes see the moms and dads that are just. You know bags and their guys who just sleep deprived them on pace but it's what we have we're gonna keep pushing through some of the strongest people and government. The symbol of your experiences at being diagnosed as teenagers having read parents and mingle little hovering over you all the time. My parents really didn't didn't cover as much I was already going through big transition trying to figure out my own identity and they wanna to enable me to do that. There there is a great resource. And my moms are in the medical profession so she of course. Forced all along to sex you know loss of sight. You know kidney disease. You know a year. Nerves and your heart and all your vessels and fouls being taxed after years and years and years of dealing with this fluctuation Pletcher. I'm so she sees the darkest and you know that horrible future that's out there. It's issues very encouraging to do well. And they management but. Gave me the opportunity because I was confident enough and in my skills of many that diabetes says the kind of operate. One of the things that I plug almost parents what does that your child will be. A little smarter than everybody else. They'll really do math faster they'll be able to understand nutrition quicker. And you know even though they may make bad choices along the way they still. We'll have that power that knowledge and in others there's silver lining around this disease the community is one of us now. Yeah I would say so I was diagnosed at sixteen it was the end of my sophomore year of high school and my mom actually taken you're sabbatical she was a teacher. I'm and so it was really nice to have. Her as a constant presence and we really got into she's math teacher. So talk about learning how to deal volley calculations with out a calculator very important to learn the you know you didn't always necessarily had a calculator with you or your phone I didn't even have a phone back and south. And she was really supportive and amazing and I actually gone all the cheating asked. The week after I was diagnosed. So I've been a part of the chief your family now form almost ten years. Just because of the amazing volunteers every shot to me when I was first diagnosed when I am a little back and poked in the hospital. And and it's just an amazing support I will say that I was all right pretty mature. And but it definitely causes you to crop a lot faster because you do have that added sense of responsibility of you are responsible for keeping yourself alive. And I kind of had to figure out pretty quickly because I only had tears in times going after Colin and had to have a ball sat on my own. And so my feeling was really some part of and I got involved with different research studies. And so that was amazing to learn from all the different research professionals about different added tips and tricks about how to take care of my time. Diabetes which it's time anything. Jenny RF is an amazing resource. It is that if yes if you're newly diagnosed her if you have a child whose newly diagnosed. What can GDR. Offer. Yes so first step that we have is when your kid is actually diagnosed in the hospital they do receive a little backpack. That has tons of resources and information from them. Has lull us this great little Teddy bear called profess he's a Teddy bear with take client. And he actually has these amazing little squishy patches on hand so the kids can practice. Checking his blood sugar putting an insulin pump site aren't putting NC GM on for the first time it seemed really cute pictures of kids wearing your seat GM for the first time and if also put one honoree for spare. There's several materials in the back of help that allowed parents to connect with our chapter we have an amazing our group that actually meeting. It meets every month on Saturday it's the third Saturday of every month. And that's not a power pottery find out on southeast star. We have. Just an amazing resources and materials has information about how to volunteer all of our different amounts that are going on our contact information so that they can can connect with our community. Yet to some incredible resource Bluetooth. The home income was something for adults that I was introduced to and run after diagnosis was his type one supper club. Not so that's kind of our adult version of the back of hope so again when Nadal is diagnosed. Sometimes they don't actually end up staying in a hospital sometimes they do just depending on what stage are kind of out when they're diagnosed. But they do receive what's called an adult care can't and that has similar information and it backed. More slated torrents. Adults I'm and that has information about our supper club and our supper club meets. The third Tuesday of every month from 68 PM and work. We switch applications this month's blunt will be immediate chain type B sorrow out and solid setup. More than welcome to come. To Billy and about eight to fifteen adults. They bring their spouses sometimes but it's a great opportunity for adults with type one to kind of get scatter and talk about. What's going on. We talk about research we talk about type one diabetes in the workplace and some of the struggles I can happen without. And it's just a great support of community where they can come together. And not be judged for having ties and stuff. And it's great to have spouses and partners there as well who are often referred to as type. Threes if you hook up which is great because that that you couldn't do this without support of of some sort but the heaviest also partner can remember. Stuff yeah so it's definitely very hope helpful and it's great to have them. At meetings as well because they can explain can put their life is like it's like Q so Greg it's the everybody's impacted. It's it's really isolating disease I'm for a person that has that they often feel that they have to be private about it they have to. Maybe you are clues a little bit about it because you know it's you know needles and insolent and it's it's unfamiliar people people just. Are aware of what's out there necessarily. How my wife brie and has been a huge advocate to be a voice about it and education. My kids. Miles to Sprecher is almost set in my maximum hours four and we have a little babies Laurie joy but. Dave who both the boys tell people time for my daddy's gonna have a cure for type one diabetes. And people go what and then it gives a platform to educate. Those are my daddy's medicine. To him is not doing great today. And so we talk about that we have that conversation. To educate people we want we want awareness that's. When you get that voice and you have that support from year T three carton of or just your neighborhood or hear your community with GRF we have some online on groups that were part of where. People reach out and they they just are supporting you know us are come coming through town and we're having an issue and deceit a community rally around and it hasn't passed on to social media. Themselves it's it's need to give some additional voice and increase that awareness where we've been including our. Are represented as and our senators from organ in Washington in. A lot of that voice where they've been helping out with some legislation pushing some of that threw for additional funding from the government. But through very very expensive. Disease to manage to the tune of fourteen point nine billion dollars a year. So. You know when we share that cost is community and we're raising our own funds were not just relying on handouts we're for raising money to. Offset the cost of those you know research endeavors but also to keep people healthier. A lot of costs come from having to. Take care people left this party gotten sick or they already gotten complications snow but we can do on the front and about raising money for research. Really can save costs and long term. It's a pretty expensive disease to manage. It consumes expensive. And right now that I am and test strips are expensive all the equipment is expensive. And but it's so completely necessary that it's not like you can say well I can afford insulin this weeks and I can get and hit like. Yeah Uga you really don't have that option there and it's and it's one of those diseases 24 hours a day seven days a week 365 days a year there are no other alternatives. Viable alternative sources say no you don't take care of it you. Your Q the life threatening disease on a daily basis and my wife calls my greatest science experiment. Texan Janine is a science experiment you know get to think about. Now the food it's in front of you but the exercise you've done to exercise you're going to do. I'll let the composition of that suit how's it going to be absorbed is going to be. Short term you know burst or is it going to be long term complex carbohydrate. It is so many things and always a hot outside he's going to be sweating during that exercise there. Is Nicole and maybe you're gonna have a slow the slower metabolism that it's just so many factors go in there and not a rocket science and not stay alive science center. That are one it's amazing that they lake where adults and handling that's the we have kids Britain. Bitter dealing with this and trying to figure out as a foreign five year old how to handle less and it's amazing to see. Their maturity and willingness to kind of take it on and and being positive it's amazing to see but it's also. No kid should have to be doing that no one it also be having to do that but thinking about young kids that are having to deal with. Trying to calculate their carbohydrates and giving insulin and you know it's stopping them from being able to play because they have to deal with a low blood sugar and being that shouldn't happen. We wanna snack and can't go have a snack with you know do all these pieces check your sugar cover the carbohydrates site. Why not you know kids should just feel of the kids and you know I really think that that's. That's one of the essential underlying goals. You know getting this care is restoring the health and also the the livelihood of children that are impacted. I was grateful that I was a little older. But that same time I have the burden of knowing what it was like to not have to deal with diabetes and so I struggle to that's in peace and you know that's some parents like on my son was diagnosed eighteen months you know he never knew anything different like. That makes me so sad yeah. They look at it as a silver lining once again. Kathleen. I was diagnosed at 42. So I had I had a long flight from whom of not having type one diabetes. And then it it doesn't can happen to anybody you know its that I don't mean to be. Terrifying the audience here for now they're kind of. If I see many kids as young as six months old be diagnosed with type one and I've seen. Adults in their eighties be diagnosed with type one diabetes that can hit anyone at any time men. Islands. A very fit athlete when I was diagnosed. Him I mean it can hit. Anyone and that's the reality of the diseases that it. That's another you know misnomer often has people thinking get diabetes because here you know don't take care of yourself for years you ate all that sugar as a kid Satan. Now that's that's not type one diabetes at all. You know others. There's so many things that they don't know of the origin sick is it environmental president. As it somewhere in the line that you have of a precursor or a pre destination there. Some kind of an industry managers DNA evidence that's. Susceptible to this they don't know and haven't isolated perfectly yet. How we know it every spring and every fall there's first of people to get tagged and released flu season's flu season. Coming out of you know. Flu season we see this you know six to twelve months. Incubation period where you may have had some major sickness. And that major sickness has been. Pushed armed and said hey you got 66 or twelve months ago and then your supplier of insulin is kind of depleted through your system. It's really sad that we can't isolate it and then just squash it. We'll see if that. Happens and you know we're working towards an all time it's one of the big areas of focus right now is well if we can figure out how we can stop. Stuff. So I'm just talking about flu season also and we have a lot of common signs for diagnosis of type one. And just as we're we're starting to get into flu season I just wanted to mention that really quickly so if you're seeing someone. Constantly drinking water consulate having to go the bathroom losing a lot of play maybe not being. So conscious all the time with their words. Really lethargic or irritable. Or they think they how tough will it mean easily that's from the unique and optionally tally your doctor that you're like. I have these kind of science. Because they aren't a lot of times symptoms of the flu and that is. When tape when alliance hands gets credit crunch triggered. And so we can save a lot of lives of people are just get a simple. Urine test finger stick just checking their Pletcher. We've lost a couple kids this past year because they were undiagnosed. Because their doctors just not that they had the flu. So better safe than sorry just to quick little test. And it could save someone's life. In the last minute or so that we have here let's talk about hell. Everybody can help out with GDR from the walk and everything in in there a way to get involved tolls on the walk is again. Yes and a walk again is the Sunday September 25 out at north brought acre lawn at Portland international raceway. Registration opens at 9 AMR walks and a kickoff at about 1030. We should be done around noon so if there's football games or other things he had going in the afternoon there's still time for that. And and it's really simple if you just gonna walk dot JD arraf dot org you can register for the event or donate to the event if you feel like. You are not able to come he can be a virtual locker if you do raise a hundred dollars or more. We will have these incredible little lock shirts that say walk to and TU ND and we haven't tie dye tent at the lock this year they're able to tie dye your rock church so. Really simple easy way to get involved. And helps a lot of people we have about 3000 people to come on Tara walk every year and for them to see the support from our community is in crack. Ball and lots of information available on site to link yes increased the blues and places to get so tons of information is not type one and. We've a lot of support from different pharmaceutical and diabetes related companies as well as other companies within our community. That are out there as part that's great we'll have a great walk thanks you know very soon mr. Ursula media development coordinator Regina Europe and Greg Smith junior walk corporate chair thanks bill until they don't have. Mr. scope is an intercom reveal Portland public affairs program I'm Gary blocks of if you have a nonprofit or public affairs organization that you'd like to let others know about you can email me my email address is macro Scopes that inter com dot com. Remember intercom starts at an. If you can always go to this station's website click on the community link and submit your information there. If you'd like to hear this program again you can visit our website at microscope PDX dot com thanks for listening about the scope and enjoy the rest of your weekend.