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Hemophilia Of Oregon

Jun 3, 2014|

An interview with Madonna McGuire Smith, development and events director for Hemophilia Foundation Of Oregon, about blood disorders, their fundraising/awareness walk and run, and camps for kids.

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Automatically Generated Transcript (may not be 100% accurate)

You're listening to masters -- a series of interviews of people of interest in northwest Oregon and southwest Washington. My name's Gary blocks of for over four decades the hemophilia foundation of Oregon has provided programs and services that promote and support knowledge health and efficacy for all people whose lives are affected by bleeding disorders and like to welcome the microscope Madonna -- Smith -- the development and events director for the hemophilia foundation of orient -- there Madonna. Parallel let's start off today by having you tell us a little bit about yourself but don't. I actually am a mother of three children my husband and I am moved to Oregon had about a year ago. And I. Is -- I mean come development of objectors through my experience at all then and nonprofits and -- -- comes secondary education. Massive fundraising and program development. And seller may have been very creative -- you know Morgan Freeman -- saving America foundation -- and have a position available and -- After I did. Great so how about telling us a little bit about what the he Montpelier foundation has. -- good foundation of Oregon -- is it possible for. All education and announced support for individuals living with bleeding disorders and southwestern Washington and all of the state of Oregon. -- -- do a lot of programming. Mostly for people who are already diagnosed with either he regular -- about movies or another brain disorder there are few minor ones. I'm and we -- Some of -- safe friendly environment for people can network. Learn from each other as well as learn from a lot of experts. So generally every month there's at least one or two activities that you can get involved and some -- of state Lawrence in southern Washington. Please can learn more about your brain disorder or our network of people who have a similar brain disorder. Pucks -- Favre audiences unfamiliar with bleeding disorders can you tell us. Tell us about those. Sure though that look kind of weather people know much about it's he would feel yes. And he was feeling is. You know very old out in Colorado blue blood found it means. It generally is that I am in mail only although there's a ball protect percentage of women who are now diagnosed with hemophilia. The largest categories of hemophilia. Hemophilia a which is hemophilia factor eight deficiency. Or hemophilia B which is an -- factor nine deficiency. There also a few other deficiencies as well some -- -- seven. But those are incredibly minor the two largest groups are and B. I'm if you basically you don't have a pro team so when you think of your blood clotting and there's something totally missing -- gets to that's state of the calling it just doesn't happen and you continue to believe it. You don't leave a lot. He just played longer than anyone else so if you don't have you know feeling than you would caught in a few seconds. I wish you affiliated. Sometimes never happen because just continue to believe traveler. The other -- category agreements -- called bubble -- disease. That's named for the doctor that discovered it and he discovered gave me an early 1920s. Found in a family that had two of their daughters. Bleed to -- for their monthly cycle since he did some research and discovered they were missing. A pro team called a lot about factor. Which is basically. Allows your platelets to stick together. So if you don't have that you play let's just go out with the injury. Don't form a -- and so therefore you continue to bleed just like Q what if he had he was feeling it. So either one of those sleep disorders can be found very scary and I obviously. Sounds dangerous if you -- kids in the -- around -- getting hurt and the injured. So. It's you main category the bleeding disorders but there are other minor ones as well and we just sort of all of those individuals. Okay say someone has a bleeding disorder and they don't cut themselves which is there of course that -- everybody cups themselves and everybody bleeds but if you if it besides. Cutting yourself and injuring yourself -- are you affected by a bleeding disorder. In your everyday life. And absolutely so for example I don't have a brain disorder my husband has become relevant in our family. If I twisted ankle I just get torn ankle because I think I have a little bit of implementation of -- -- you know the -- swelling whatever. But if if a child are personally I believe disorder. Two weeks of ankle. Just slightly and happened this stretch or. Injure the tiny little blood vessel and enjoy it. And they can actually get a jointly which is prohibitive for there to live another joint and it's very painful. And also leads you. Early antenna. Are trying to say get calcium buildup in the joint which causes arthritis. I now live from port say they're allotted and young -- here -- -- I try to tissues because they've had -- believes that. -- take forever -- -- or are they didn't get around them right away so. Although it does then. Nothing is different if they've never had an injury but the slightest of injury is even if you don't even know you're injured can be an issue. But typically when you get -- -- big deal by then I think anyone else sort of. Because. They're not often times people think of leaving cowardly like he hasn't if you cut yourself but you bleeding internally is I would imagine is an issue as well. Absolutely. And them. I think evidence in my husband has Obama about these -- -- all three of our children have had as well. An -- diseases. Not in. Specifically other gender so. Here affiliated. -- back they -- -- on the X coming down. And I would rather -- -- the -- -- -- so it's not generous statistics show well about that it can be equally in men and women has. Every child born from -- has novel about it is there's a 5050 chance that that's how we'll have normal about today's. Still our three children all have them. And when my daughter she's ten now and see whether that. Fifteen months it took -- -- you know cut a few months since she. Doubt about it 1 morning she crawled out of her bedroom. And I was I was. We -- for -- they were the popular talk about what was going on that you said that her foot hurt that you couldn't step on it. And are there is how we learn that their first experience and are failing she had a I think probably which we didn't even realize. Could you could have put -- about movies especially severe enough that she does get them. There was quite an experience traffic there's actually more dangerous to have a jointly because you don't know it's there and you don't know what the damages. That is that an external cut the next -- I can see how much blood related then you can manage that we can replace whatever your -- but when it's enjoyed it's harder. The Alamo and a must have been a very scary situations where you. It was it the past three doctors to finally tell me about the jointly. And then reach. Cheated her web where Obama bounce back there and she was -- lifted today but we just felt that very first experience. Although my son will be diagnosed two years almost about a year and a half earlier. We were just relatively new to the whole thing we really have no idea what we're dealing less. So it's kind of very scary actually. Yeah. -- -- the bleeding disorder. Cared for. Well I'm. That's really good question. There are sort of several ways to treat pain -- disorders. One is if you're my elbow and then typically if you have hemophilia there's very little change meant only if you have some sort of major injury electric car -- our surgery. And you just go about -- I can elevate. You know they give -- play -- a hole right. Treatment where you put compression and you elevated and other kind of stuff. And then if you are more moderate to severe. Then typically you would -- where. A blood product of some kind. For people with hemophilia they can treat with -- recombinant factor which is made from non human felt that you cannot contract. Blood borne diseases say you can actually -- with that still a lot of men and now women they let -- feel they can actually treats. -- from the week and prevent lots of -- so it's the lifestyle is comprised completely changed and improved and incredible for people now living with hemophilia. You really it's not nearly as detrimental Sierra livelihoods. As in the past now you can get pretty tree you can even go out and play at a pickup basketball game if you ought to treat you know straight ahead of time and you can prevent -- People living on bubble about to -- is now unfortunately. It's a more complicated molecules so it's more difficult. To create a recombinant products. So. Still people -- all of the data treated less human plasma. And then you know back in the eighties and -- a lot of people contracted the other diseases giving him a plasma so it's a more dangerous. Situation needs time view entry with senior -- you. And you know he could expose that person to blood borne diseases that we're not yet aware of I'm so they don't encouraged -- that there are people that do pretty cheap that they don't encourage adoption because you'll -- reduced exposure to those unknown to me there's. Found so in the case of our family. It's as needed to know. Erie county and or blood product you basically have to take a liquid and exit with a solid. Powder. And they than dissolving you have to put it in -- IV so it's not shot or killed. Have to actually get that data access and pushes through restaurants. And it came into the game. So it's not an easy treatments. But it's a pretty comprehensive treatment so basically. Once you get that damn near replacing what it is they don't have a main immediately start to. -- And that's something that moment have to do I'm assuming you told -- could tell the kids old enough to take care of himself. Exactly so what we do is let their little tiny ones can we we start to do that helmet and and we encourage. Failing to good how about a possible that they often have to go into. The treatment patterns and get a sense of hemophilia center Eric here and in Oregon is in. It that's. Kelly can't he thinks -- very paranoid as you and they typically healthy with the treatment of the early years. And then uneducated children -- being -- -- -- -- have more confidence. You learned to treat them at home and and we've and the kids to camp starting at eight -- and that's a big focus that he would feel they are bleeding disorder camp. Is teaching the kids can manage their own life. So -- start early and teach them to get their own games and to treat themselves so they become independent as they grow older. And can go on. Out of town field trips and then high school years then and you know potentially. President. I'm limitless opportunities and and college because they're encouraged to get manage their own care. And fortunately for we can get my daughter at home since the tenth album my son that's twelve. He's a very difficult for the fact they've actually sentence from one hospital to another because they can't get haven't made it very difficult. These forward -- to give himself. But my ten year old daughter has its Sam's is actually working as you can get herself and engage -- -- can get the pain and pushed the product the end. And Cheney herself was to become very important bashing it a little bit older and -- content puberty and we'll have to deal with a monthly basis. -- them it's really important for girls especially to get that -- treatment down and learn how to do it themselves. -- -- -- -- -- of the terrorist. You know it's like why -- why I have to poke my child like UK meaning they believe I can't believe I have to help determine. Make him believe -- stop them from leaving it out at the stats. Little scary at that time they had. Little nerve racking my near the kids hurt and you know you need to get a blood drug treatment and famine you're stressed semester has been but. You know they -- a -- call -- some exercises. A lot of ways to make it be successful at home. Because it's actually revolutionized the way that that people are putting the first lead because prior to that they would. Spent hours at the hospital getting drip irrigation and get get. Step into their name then I would just take for ever. And now the few minutes then have to play. Well signs is amazing isn't it. And -- incredible -- you know new products coming in America all the time. And you want perhaps hemophilia a second nine as -- as long lasting and verifying that people are able to go. As much as -- week and a half to two weeks in early trading luncheon at times felt. Incredible how much it's progressed just since about 1980 it's just. -- And it's really changed life for people -- putting -- You had mentioned camp a little bit ago I know camp for kids is a great way for them to meet other kids with that with similar situations and they can just kind of become friends and and how somebody that they can identify with do you have some camps coming up this summer. We do we actually have two great programs one of them is for teens who are some 1516. Up to about that money. And we work with them -- transition to. Life -- -- around away from their parents. So they will begin with program and opal creek found at the end of June. And then that in August the pursuit of August we have a great camp for all kids seven to seventeen. And there's siblings because they believe -- disorders don't just affect the person who has the disorder it also affects the whole family and the life of the family. So also blankets are invited as well. It takes place we -- -- tap the window. Because there's several faults and the kid go from a week's Sunday the Saturday mound and drop them off on Sunday and get them on Saturday very B hadn't had to fix. Should warn and that's very excited to have a bad love can't -- can look forward to camp every year absolutely love that week and I love the week off -- How hot bet is that what the where can never really get information about camp opened in about your organization in general. Well you can go to jail got to get AW that hemophilia organ dot org. And on there has. A lot of information about bleeding disorders in general is also linked to the national hemophilia foundation web site that has even more information. But on our web site we have upcoming events. And we're now working on getting some applications are right -- the site we've hired a contractor to help that even improve our -- even more. So I hope that it will begin to use that website even more for information and submission of applications and request first and patient support and all kinds of things will be available on the web site. Have a look at USA there's lots of information that's great. Parent parent can you do have a better idea to. Do you have very big event coming up this summer that most exciting it's actually. Our largest information -- and it's the best way it had to let people know about sleep disorders some of the challenges of living that those sleep disorders and that is. Our hemophilia locked. It's part of the national programs so across the United States Daryn 34 sites that are doing similar walks throughout the year. We are hosting our -- interpreting. Recreation complex in Beaverton. I'm if I'm June 28 and it starts -- -- checking in at 9 AM and the walk begin about 10 AM. We have part of -- and -- a lot of sponsors we have a band called the white rhino marimba band he'll be playing we have. Starbucks coffee and I have angles than Columbia gorge strains can. I'm kind of of great things. -- power emergencies without the kind that provides free pizza. And this year that aspect here with a lot initially wanted to. Increase even more any awareness tea -- -- -- -- and under run. It's called -- for our lives the bloody round of it that it takes place on the same date June 28 but interpreting -- but earlier. So at 7 o'clock check in an 8 o'clock run start times. It's five mile long and you can go to our web site and register for either one of those or go to the links to get registered for either the walk or their -- They're run out will be finished by the time we start block for runners and -- won't be on the same course. Blockage -- about a 2.5 commoner and I think it for the runners there's a five mile run. To great way to raise awareness about your cost. Yeah I hope so we did great actually had about three have to give people their first one. I'm in Oregon and I have actually my experience within Western Pennsylvania only lived there I'd have managed to -- fan for four years. And it was it was it quickly awareness and the opportunity we have people bit. Came they had never been involved or even understood or knew anything and I believe it's -- very good amateur here. So like Papa -- We get we made a connection through them you. Have a partner. Found in in Washington the united child looking and feeling so the guy locally would like let me help you really want to support. -- my friend in this family and the way that you know they deliberately misunderstood the great awareness opportunity for. The entire community of South Portland has the whole state organs. That's fantastic. Eleven people. Band together to him to help each other outlets it's so important to do stuff like that. I truly wish have a support -- -- -- for an American to do a little mini locked in Medford this year the week before the lock at their family camps so we have a camera kept happening Adams. That third weekend in union which is June. 20/20 first and 22 and then I do like a little mini block. And that and provide some support is a lot that takes place in front of the next week. That's great talent that together with the ballet. But what we're talking with Madonna -- Smith development in -- director with hemophilia foundation of organ. So Madonna tell us more about what the hemophilia foundation Morgan -- Well we do and the big thing it's really support. We also provide patient assistance -- -- family having a difficult time paying to get to the doctor's appointments or. Cancer -- gentlemen deployments that we help support as well. -- basically. Just provide education and support. A lot less help from hemophilia center and elitist view to keep people. Informed and supported that they would lift -- disorders we just want people to feel like there's a place to go if they have questions. Four of their concerns. I think the best. Story your example I can give you a film when my kids are diagnosed there -- living in South Carolina. And there was not a support group that it would not foundation. And we knew very little about what allegedly are living that's my husband and I were. Stressed to me are concerned and we didn't know where to turn and then went into Western Pennsylvania. There is a great foundation married and we had people that have this same disease we had a we are able to meet with Sam on a regular basis and share life experience. So that you not only saw the -- -- SP became friends outside of that and now we're in Oregon my experience in the exact same thing. We've connected with family is. Because I believe the -- but we've become very good friends in the long run. So it -- great opportunity. To share. And I learned so we bring in experts and we bring in everyday people that share life experiences and to. This really support as well I think first of all kinds. I'll candidly disorders -- anyone. We had them more rare wines by the factored Henderson fear factor elevenths they seek out the utility commission because it's a -- field. To meet others you have your disorder even though it's very minor. And the numbers. It's it's definitely big in our books so we're happy to help -- anyone who had a brain disorder. And there's lots of information available and people feel real -- dot org. Other volunteer opportunities. There are actually with a -- we used about fifty to sixty volunteers. Comment the team programmer going to be using some volunteers as well they probably -- -- I'm taking care of as far as clearances is absurd because it's it's only a few weeks away. -- yes I have other things they have an option coming up in the fall we do. Silent auction and raffle basket auction that takes place at the end of October. Allaire an annual meeting in. September that we can use some volunteers for -- as well we have a women's retreat weekend we have. Parent the parent parents we can -- looking for support. Donations of course and volunteers for any of that so they can go to our web site advantage of student and voluntary and they can -- it. Email -- through the web site and live in touch with them. Great will the last couple minutes here let's remind everybody about the you know walk that's coming up. OK for the USA a -- and be around her -- the bloody Ryan take place on June 28. At interpreting and recreation complex and that Beaverton. I'm second from the -- begin at 7 AM and the ride itself begins at 8 AM it's a five mile course all within -- interpreting complex. And there's a lot of great food and drink for runners at the end of the run. And then there's a lot of activities as well for all the lockers as they begin to check in at 9 AM on the Chinese again and the walk begins at 10 AM. We're gonna have games food activities the band prizes all kinds of fun stuff. And have lots more information on camps this summer. That you can find that out as well as the hemophilia. Web site dedicated -- that he was gonna organ -- work. I'm can't take place for the -- you they'll go to opal creek on June 22 through 24 and and then the youth camps 0% of the seventeen year old will be found August 3 through me. And I think as a -- to the ninth maybe. And that's in near several fault filled her -- -- -- -- -- -- -- -- -- -- Very nice and again all the information is available at -- -- Oregon dot org. But Donna McGuire Smith development and events director with a hemophilia foundation of Morgan thank you so much for being a microscope today. I thank you very -- -- -- and Entercom communications public affairs program. My name's Gary and if you have a nonprofit or public affairs organization that you'd like let others know about you can email me at macro Scopes @entercom.com. Remember -- com starts for the need for you can go directly to the station's website click on the community link and submit your information there. Also we like to hear this program again you can visit our podcast page at microscope PDX dot com. 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