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  • Reaching Out to Local Chapters
    Tousius That to me is a success Felix Olaya right teaches a group of chapter staff an ice breaker at a Train the Trainer workshop Artistically Speaking workshops were also held in North Carolina and Michigan this fall I m willing to adapt whatever exercise for whatever the chapter needs Watson says Art is an important tool for our community to use and it s beneficial Work for You The program offers four 90 minute workshops to help adults navigate career issues Topics can also help teens looking for their first job or retirees embarking on a second career Launched last spring the workshops comprise Work Life Balance Walking the Tight Rope Your Dream Job What Makes a Good Career Fit Career Management Being Entrepreneurial About Your Career and Job Search Basics What You Need to Know to Get a Job This education is especially timely for those with bleeding disorders Starting at the teenage years the first thing you re told is You need to go out and get a job with insurance Rotellini says Lisa Orbé Austin PhD is a career psychologist who leads Work for You sessions at NHF chapters Given the nature of bleeding disorders there s a lot to think about in terms of what careers may be a good fit what benefits you need and the jobs you choose she explains Further your career often shapes your identity Many people don t realize how important it is until they lose a job or find themselves in long term unemployment she says Helping Chapters Grow A participant at the Artistically Speaking workshop in Chicago is engrossed in her task NHF is also educating chapter leaders in managing their organizations via Programming training As a chapter leader one of the primary challenges is developing engaging content and activities for each meeting retreat and conference The Steps for Living Train the Trainer educational program helps leaders do just that This three day in person workshop shows chapter staff how to facilitate activities and discussions It also shows them how to organize logistics deal with conflict and keep people engaged Participants walk away with a 150 page step by step reference guide Before Train the Trainer Harvey Simi recalls that her Nebraska chapter struggled to involve young people They go to school every day so to have them listen to a lecture was not attracting them The program armed the leaders with ideas for fun interactive sessions such as a Family Feud style game called Factor Feud It was a resounding success Harvey Simi says After that they were inter active laughing and sharing stories Financial support NHF works with chapters to connect them with grant opportunities that can make a world of difference says Kleiber A number of chapters now have their first full time director solely due to capacity building grants provided by NHF Increased financial support also encourages new chapter formation Over the last eight years we ve gone from 34 to 51 chapters a

    Original URL path: http://www.hemaware.org/print/1409 (2016-02-18)
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  • Reaching Out to Local Chapters | HemAware
    About Your Career and Job Search Basics What You Need to Know to Get a Job This education is especially timely for those with bleeding disorders Starting at the teenage years the first thing you re told is You need to go out and get a job with insurance Rotellini says Lisa Orbé Austin PhD is a career psychologist who leads Work for You sessions at NHF chapters Given the nature of bleeding disorders there s a lot to think about in terms of what careers may be a good fit what benefits you need and the jobs you choose she explains Further your career often shapes your identity Many people don t realize how important it is until they lose a job or find themselves in long term unemployment she says Helping Chapters Grow A participant at the Artistically Speaking workshop in Chicago is engrossed in her task NHF is also educating chapter leaders in managing their organizations via Programming training As a chapter leader one of the primary challenges is developing engaging content and activities for each meeting retreat and conference The Steps for Living Train the Trainer educational program helps leaders do just that This three day in person workshop shows chapter staff how to facilitate activities and discussions It also shows them how to organize logistics deal with conflict and keep people engaged Participants walk away with a 150 page step by step reference guide Before Train the Trainer Harvey Simi recalls that her Nebraska chapter struggled to involve young people They go to school every day so to have them listen to a lecture was not attracting them The program armed the leaders with ideas for fun interactive sessions such as a Family Feud style game called Factor Feud It was a resounding success Harvey Simi says After that they were inter active laughing and sharing stories Financial support NHF works with chapters to connect them with grant opportunities that can make a world of difference says Kleiber A number of chapters now have their first full time director solely due to capacity building grants provided by NHF Increased financial support also encourages new chapter formation Over the last eight years we ve gone from 34 to 51 chapters a 50 increase he says Organizational training Two regional leadership seminars are planned each year and there were 20 board development retreats this year alone says Kleiber Rotellini cites additional examples of direct chapter support through chapter trainings with expert speakers For 2016 we plan to continue to grow to offer more to chapters says Rotellini Those offerings include regional trainings in the spring that will cover how to create a youth development leadership program addressing how teens and young adults think and how best to engage them Making Advocacy Easier Sarah Watson facilitated an Artistically Speaking workshop for teens at a Hemophilia of South Carolina event One visible result of a chapter s success is advocating for the needs of those with bleeding disorders on

    Original URL path: http://www.hemaware.org/story/reaching-out-local-chapters?quicktabs_story_page_tabs=0 (2016-02-18)
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  • 504 Program and Parental Rights | HemAware
    usually a meeting with teachers a school social worker the school nurse the parents and sometimes the principal This interdisciplinary team develops the educational plan for the student But parents of children with bleeding disorders usually don t want or need to do this The needs of their child can really be met through the Section 504 program What are some problems that parents come up against with their school Allowing self infusion is the one that seems to occur the most Some schools won t even give kids aspirin these days and self infusion requires medicine and needles which are things a lot of schools would rather not have on their campuses They just would rather have the child do it at home or somewhere away from the school But they are required by law to provide space and time for a student to self infuse There s also the matter of missing classes for doctor s appointments or other medical reasons which can come up especially if a kid has an inhibitor The schools have to make provisions to make up time from missed classes How does your chapter assist parents The first thing we do is make parents aware that this law exists and protects their child We educate the parents to be advocates for their children we teach them the right questions to ask and the right things to say If they meet with a lot of resistance from the school we will sometimes call the school on their behalf but for the most part we encourage the parents to do the advocating themselves We have some members of our community who are school counselors and they speak at our consumer conferences so it works as a train the trainer model Having our chapter intervene is

    Original URL path: http://www.hemaware.org/story/education-advocacy (2016-02-18)
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  • Scans in Demand
    If it s old it shows up as a speckly white It displaces when you put pressure on it with the transducer head she says If it s new or from an inflammatory process then it s clear At least one student was not so gung ho on the ultrasound procedure at first I was a very big skeptic when Dr von Drygalski first brought it up says Doris V Quon MD PhD medical director at OHTC But after taking one course she s changed her mind I think it would help the patients and that s most important Wavebreakmedia Thinkstock MSKUS has advantages over MRI including the speed with which results are ready If you re the ultrasonographer you can get your answer immediately remarks Quon Its sensitivity is also a plus MRI is not as sensitive as MSKUS to soft tissue changes and bleeding von Drygalski says And patients appreciate the comfort factor It s not like an MRI which is noisy and annoying says John Powers 38 who has severe hemophilia A They had the lights off and I was lying down on a bed It was relaxing says the information technologist from San Diego When time matters MSKUS delivers A full joint exam using MSKUS takes 10 20 minutes an MRI can take three to six times longer See sidebar MRI and MSKUS Go Head to Head Limitations Both the trainers and students of MSKUS admit it has limitations The drawback is that it cannot go to the interior of the joint says von Drygalski For instance MSKUS can t detect an anterior cruciate ligament tear in the knee she says It cannot penetrate bone and images may be compromised in patients who are obese Quon is not convinced that MSKUS is foolproof in pinpointing the source of pain Even if fluid is present that doesn t mean it s blood she says She acknowledges that there are ways to distinguish blood from a joint effusion or fluid But it won t do it 100 of the time And as with all technology practice and expertise make perfect It will be very physician dependent Quon says Bailey is the PT at her HTC She knows the anatomy better than I do in terms of muscle groups so she ll pick it up faster Lastly the cost may be prohibitive for smaller centers or clinics The proof is in the patients For the skeptics MSKUS is initially theoretical until it is used on patients in the clinic The UCSD course lets students work on actual patients who call the HTC to have their joints scanned Bailey scanned one patient s elbow We were able to see in an old elbow bleed that all of the fluid in the joint had not resolved although he had no pain she says Suddenly the man s weekend plans changed Instead of packing the car and heading to the beach for an afternoon tossing a Frisbee with his kids he decided

    Original URL path: http://www.hemaware.org/print/1407 (2016-02-18)
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  • Scans in Demand | HemAware
    20 minutes an MRI can take three to six times longer See sidebar MRI and MSKUS Go Head to Head Limitations Both the trainers and students of MSKUS admit it has limitations The drawback is that it cannot go to the interior of the joint says von Drygalski For instance MSKUS can t detect an anterior cruciate ligament tear in the knee she says It cannot penetrate bone and images may be compromised in patients who are obese Quon is not convinced that MSKUS is foolproof in pinpointing the source of pain Even if fluid is present that doesn t mean it s blood she says She acknowledges that there are ways to distinguish blood from a joint effusion or fluid But it won t do it 100 of the time And as with all technology practice and expertise make perfect It will be very physician dependent Quon says Bailey is the PT at her HTC She knows the anatomy better than I do in terms of muscle groups so she ll pick it up faster Lastly the cost may be prohibitive for smaller centers or clinics The proof is in the patients For the skeptics MSKUS is initially theoretical until it is used on patients in the clinic The UCSD course lets students work on actual patients who call the HTC to have their joints scanned Bailey scanned one patient s elbow We were able to see in an old elbow bleed that all of the fluid in the joint had not resolved although he had no pain she says Suddenly the man s weekend plans changed Instead of packing the car and heading to the beach for an afternoon tossing a Frisbee with his kids he decided to ice his elbow wrap it and let someone else do the heavy lifting For him it was an eye opener that he needed to take it easy says Bailey In contrast another patient was sure he had blood and fluid in his ankle joint We as the students couldn t find anything no blood or inflammatory fluids admits Bailey But neither could the instructor A cortisone injection improved the man s symptoms which were caused by inflammation she says Powers has had several joint bleeds imaged by MSKUS They could see where the bleeding was exactly and they prescribed my factor differently he says Until then he typically treated a spontaneous bleed with a double dose of clotting factor that day that night and the next morning I was putting myself at risk for a clot Powers says It was very dangerous Instead his hematologist prescribed a smaller dose of clotting factor over a longer period She then re examined his joint using MSKUS to see if the bleed had resolved The results from Powers MSKUS scans have improved not only his treatment regimen but also his exercise routine He has stopped lifting heavy weights and started lighter exercises I m more prone to do physical activity that helps prevent

    Original URL path: http://www.hemaware.org/story/scans-demand?quicktabs_story_page_tabs=0 (2016-02-18)
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  • The World Federation of Hemophilia Changes Lives
    with a bleeding disorder in a developing country like Nigeria access to any sort of treatment is next to impossible Due to supply issues or the lack of commitment from the government patients do not receive adequate consistent treatment A New Era of Treatment for All NHF CEO Val D Bias visits bleeding disorder s patients at the National Hospital in Abuja Nigeria The case of HFN is typical Before the WFH began signing multiyear donation agreements the treatment provided by the WFH Humanitarian Aid Program was a temporary solution to a far greater problem Now with a predictable source of donated factor product people around the world can count on treatment for more than just emergencies Multi year commitments to the Humanitarian Aid Program allow the WFH to set treatment goals For instance with a reliable flow of product the WFH can set a goal of putting every child under 5 who is in need on low dose prophylaxis eliminating the chronic joint damage that plagues many adults later in life We are now in a position to be able to consider providing humanitarian aid for prophylaxis in children and using this product for surgeries and acute bleeds says Haffar We will be able to reach horizons we could never reach before for children and people needing corrective surgery This gives the WFH a more complete range of options to work with and to offer to national member organizations and governments he says Today with this commitment from humanitarian aid donation partners over multiple years and with the variety of donations from plasma derived and recombinant therapies to enhanced half life products there are more treatment options for the bleeding disorders communities that historically have had none Distribution Providing products to people in places like Nigeria Nepal or Venezuela is a massive task The WFH could not hope to meet the global demand without the assistance of its network of member associations Most donations are secured and distributed in collaboration with WFH USA and the invaluable assistance of Hemophilia of Georgia a nonprofit in the US and the Irish Haemophilia Society We are moving in the right direction engaging governments and corporate partners to see that the program makes a significant difference worldwide Haffar says But humanitarian aid entails more than transporting medical treatment to a given country Ensuring comprehensive sustainable care for a community requires a network of trained professionals and dedicated volunteers to run treatment centers and hemophilia organizations The Bigger Picture The WFH has worked with dozens of local hemophilia societies in the developing world such as HFN to strengthen the larger community needed to provide critical care to local patients For instance WFH s Twinning Program encourages and supports hemophilia treatment centers HTCs and hemophilia organizations around the world NHF and WFH participated in a Laboratory Technician Training at the National Hospital in Abuja Nigeria Established almost 20 years ago the WFH Twinning Program s goal is to improve hemophilia care in emerging countries through

    Original URL path: http://www.hemaware.org/print/1406 (2016-02-18)
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  • The World Federation of Hemophilia Changes Lives | HemAware
    the Humanitarian Aid Program allow the WFH to set treatment goals For instance with a reliable flow of product the WFH can set a goal of putting every child under 5 who is in need on low dose prophylaxis eliminating the chronic joint damage that plagues many adults later in life We are now in a position to be able to consider providing humanitarian aid for prophylaxis in children and using this product for surgeries and acute bleeds says Haffar We will be able to reach horizons we could never reach before for children and people needing corrective surgery This gives the WFH a more complete range of options to work with and to offer to national member organizations and governments he says Today with this commitment from humanitarian aid donation partners over multiple years and with the variety of donations from plasma derived and recombinant therapies to enhanced half life products there are more treatment options for the bleeding disorders communities that historically have had none Distribution Providing products to people in places like Nigeria Nepal or Venezuela is a massive task The WFH could not hope to meet the global demand without the assistance of its network of member associations Most donations are secured and distributed in collaboration with WFH USA and the invaluable assistance of Hemophilia of Georgia a nonprofit in the US and the Irish Haemophilia Society We are moving in the right direction engaging governments and corporate partners to see that the program makes a significant difference worldwide Haffar says But humanitarian aid entails more than transporting medical treatment to a given country Ensuring comprehensive sustainable care for a community requires a network of trained professionals and dedicated volunteers to run treatment centers and hemophilia organizations The Bigger Picture The WFH has worked with dozens of local hemophilia societies in the developing world such as HFN to strengthen the larger community needed to provide critical care to local patients For instance WFH s Twinning Program encourages and supports hemophilia treatment centers HTCs and hemophilia organizations around the world NHF and WFH participated in a Laboratory Technician Training at the National Hospital in Abuja Nigeria Established almost 20 years ago the WFH Twinning Program s goal is to improve hemophilia care in emerging countries through a formal two way partnership with a hemophilia organization or HTC in an established country for four years The twins work together and share information resulting in a mutually beneficial partnership The program provides a viable way to transfer expertise experience skills and resources In 2013 the National Hemophilia Foundation NHF was twinned with HFN The twinning with NHF has brought a new angle for development and learning to our community says Adediran In the two years that I have been attending the NHF Annual Meetings I have met new people in the community who have been a motivation and inspiration for me she says In addition HFN board members have learned more and then contributed more to the bleeding disorders

    Original URL path: http://www.hemaware.org/story/world-federation-hemophilia-changes-lives?quicktabs_story_page_tabs=0 (2016-02-18)
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  • The World Federation of Hemophilia Changes Lives | HemAware
    to the Humanitarian Aid Program allow the WFH to set treatment goals For instance with a reliable flow of product the WFH can set a goal of putting every child under 5 who is in need on low dose prophylaxis eliminating the chronic joint damage that plagues many adults later in life We are now in a position to be able to consider providing humanitarian aid for prophylaxis in children and using this product for surgeries and acute bleeds says Haffar We will be able to reach horizons we could never reach before for children and people needing corrective surgery This gives the WFH a more complete range of options to work with and to offer to national member organizations and governments he says Today with this commitment from humanitarian aid donation partners over multiple years and with the variety of donations from plasma derived and recombinant therapies to enhanced half life products there are more treatment options for the bleeding disorders communities that historically have had none Distribution Providing products to people in places like Nigeria Nepal or Venezuela is a massive task The WFH could not hope to meet the global demand without the assistance of its network of member associations Most donations are secured and distributed in collaboration with WFH USA and the invaluable assistance of Hemophilia of Georgia a nonprofit in the US and the Irish Haemophilia Society We are moving in the right direction engaging governments and corporate partners to see that the program makes a significant difference worldwide Haffar says But humanitarian aid entails more than transporting medical treatment to a given country Ensuring comprehensive sustainable care for a community requires a network of trained professionals and dedicated volunteers to run treatment centers and hemophilia organizations The Bigger Picture The WFH has worked with dozens of local hemophilia societies in the developing world such as HFN to strengthen the larger community needed to provide critical care to local patients For instance WFH s Twinning Program encourages and supports hemophilia treatment centers HTCs and hemophilia organizations around the world NHF and WFH participated in a Laboratory Technician Training at the National Hospital in Abuja Nigeria Established almost 20 years ago the WFH Twinning Program s goal is to improve hemophilia care in emerging countries through a formal two way partnership with a hemophilia organization or HTC in an established country for four years The twins work together and share information resulting in a mutually beneficial partnership The program provides a viable way to transfer expertise experience skills and resources In 2013 the National Hemophilia Foundation NHF was twinned with HFN The twinning with NHF has brought a new angle for development and learning to our community says Adediran In the two years that I have been attending the NHF Annual Meetings I have met new people in the community who have been a motivation and inspiration for me she says In addition HFN board members have learned more and then contributed more to the bleeding

    Original URL path: http://www.hemaware.org/story/world-federation-hemophilia-changes-lives?quicktabs_story_page_tabs=1 (2016-02-18)
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