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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 (2016-02-18)
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  • Gearing Up for a Family Spin | HemAware
    from recumbent bikes which seat cyclists in a reclining rather than an upright position These bikes often ride quite low and can be hard for drivers to see on the road Further they don t provide as good a workout as upright bikes Bailey says If you and your spouse or partner both love to cycle consider a tandem bike which accommodates two riders Riding a tandem is a great activity especially for gentler trails and paths Bailey says If you want something more compact consider a folding bike However be sure to clearly mark your handlebar and seat settings so you can set up your bike properly each time you unfold it And be forewarned that carrying a folded bike could tax your wrist elbow and shoulder joints Start Slowly Like any new sport or exercise go easy when you first start cycling It takes time to build up your stamina You want to advance your workout your miles and your speed in a gradual fashion to avoid injury or bleeds says Hroma If you plan to bike on flat surfaces start with short leisurely rides However if you live in an area with lots of hills prep your leg muscles with some simple exercises Sit down stand ups are a good option With a chair behind you lower yourself until you just touch the seat then stand up Do this for 2 minutes to start adding 30 seconds a day When you can do these for 10 minutes you re ready for a 20 minute ride Bailey says Plan for Safety kanate Thinkstock gears bike Once you re ready to go fill your water bottles pack some healthy snacks and apply sunscreen Then plot a trip to your favorite park or picnic spot Travel on easy terrain and set a leisurely pace if you have young kids Don t forget to plan for breaks especially if you or your children are new to biking If your kids are too young to ride consider attaching a child seat trailer or tag along bike with a seat pedals and handlebars to your own bike Falls top the list of biking risks We want people to be extra careful when they re biking out in public not because we think they can t handle it but because other people may cause them to stop quickly or swerve off course says Bailey For that reason she recommends biking on days that you use prophylaxis just in case you take a tumble Before you set out equip yourself with safety gear You should not ride anywhere without a helmet Hroma recommends knee and elbow pads as well Other safety measures include wearing bright clothing when biking and mounting flashing red lights on the front and back of your bike Night riders should also wear reflective vests and place a light on the front of their helmet and reflective strips on the back The safest places to ride are dedicated bike paths Park trails

    Original URL path: http://www.hemaware.org/story/gearing-family-spin (2016-02-18)
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  • Prioritizing Balance: It Starts With You | HemAware
    one formula that applies to every woman There are however tools to help women make choices that better align with personal priorities It s important to recognize how you are contributing to being out of balance says Orbé Austin To discover their priorities workshop participants wrote a top 10 list of what is most important to them They assigned how much time they spent on each item during the week It was an eye opening exercise for many Amy Walker 37 of Hampton Virginia attended the workshop She has a bleeding disorder as do two of her four children During the workshop she became aware of a priority that had slipped My marriage is a priority but I could see that I was not making enough time to help it grow Walker says My plan now is to spend less time on social media and to make more time for my husband Many women sacrifice sleep and pay the price later At the workshop women brainstormed solutions Suggestions included avoiding violent TV shows before bed time and taking a hot bath or shower to relax Another idea was to use a gentle alarm clock that plays soft music instead of blaring noise that sets an anxious tone for the day ahead It s also important to eat a balanced diet and exercise regularly You ll feel more energized throughout the day In addition activity can lead to more restful restorative sleep Time Management Tips Another component of work life balance is time management Orbé Austin shared a way to make more of your time by using a 25 minute kitchen timer The Pomodoro Technique is a time management tool in which participants allot intervals to each task and then take a 3 to 5 minute break between them Segmenting tasks into 25 minute blocks of time helped Kelly Cartwright 47 from York Town Virginia get things done more efficiently She is a chapter board member and has two children one of whom is an adopted son from China who has hemophilia I tried it at work says the research psychologist I could focus better and more quickly cross things off my list The key to this technique is focusing on one task at a time Do not multitask no checking emails answering the phone or texting while you re performing each job Making It Happen Kelly Waters LCSW MSW executive director of the Virginia Hemophilia Foundation heard Orbé Austin speak at a regional conference She found the practical skills offered at the presentation useful and worked with staff at the National Hemophilia Foundation NHF to bring the speaker to her chapter There s nothing like coming together in one room says Waters The sharing and learning from each other was very powerful It is NHF s goal to create more educational materials for women and offer in person workshops to local and regional chapters says Kate Nammacher MPH NHF director of education Expect to see more work life and other

    Original URL path: http://www.hemaware.org/story/prioritizing-balance-it-starts-you (2016-02-18)
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  • Sled Hockey Puts Hemophilia on Ice | HemAware
    some sort of disability We have several players with spinal cord injuries who are paralyzed from the waist down The youngest player on our team is 9 years old and he lost his legs in an accident And then there s me left ankle fusion right ankle replacement and severe hemophilia Why do you believe that participating in a sport like sled hockey is important for people with disabilities Everyone on the team has his own unique story about why he s in that sled and they re all stories about having something being taken from you When I m playing I feel like I m taking something back that my disability has robbed me of That s the great thing about team sports especially when you have a disability It gives you back that feeling of control When we re on the ice everyone is equal Everyone is just part of the team How are you getting the word out about this new league We re going to be playing a few exhibition games against teams with able bodied players who will be using sleds We re excited about one in February where we ll play against local celebrities like radio hosts and the chief of police I ve started Facebook and Twitter accounts for the Rochester Mustangs to try to raise our profile I m going to school for public relations so I m trying to use the skills I m learning in school to help raise the profile of the team Hopefully people who may have felt that they could never play a team sport can find us and join Why do you feel it s important for people with bleeding disorders to participate in sports I was born before prophylaxis became standard treatment for kids so

    Original URL path: http://www.hemaware.org/story/sled-hockey-puts-hemophilia-ice (2016-02-18)
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  • Getting Ready for a Move | HemAware
    import limitations and laws for medications so that you don t find yourself without factor Robinson says Contact your insurance provider If your insurance changes make sure you know how to fill new prescriptions If you receive factor from a homecare company a pharmacy that delivers prescriptions of factor to your home your insurance company can help you navigate how to get factor in your new location Anticipate anxiety Your child may worry about answering health related questions from new classmates Role playing can help Practice what kids might say in response to questions about their bleeding disorder Swenson suggests Kids don t have to give too much information The basics are enough Communicate with school staff HTCs can help with your child s school transition Your current HTC can send the new school a treatment letter so that the school nurse has information on file in case of emergency says Swenson Schedule a tour of the school before your child s first day and invite someone from your new HTC to join HTC staff can help educate the school and advise on special accommodations for your child particularly those related to an individualized education program IEP or Section 504 plan for students with disabilities Swenson says As you re checking these tasks off also check in with your child Offer information about the new HTC and new school Talking to kids ahead of time about what will change and being fair and honest about those changes is important notes Swenson When appropriate let your child make smaller decisions like decorating his or her room Answer children s questions and acknowledge concerns And as you pack up and make plans take time to say goodbye to your current home and friends Soon you ll be settling into your new home

    Original URL path: http://www.hemaware.org/story/getting-ready-move (2016-02-18)
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  • Spotlight on NYLI | HemAware
    directly to NHF chapters and hemophilia treatment centers Programming includes Steps for Living workshops such as Do You Bleed Like Me which offers information about various bleeding disorders Marlee Whetten is in her second program year She was drawn by NYLI s service focus and wanted to meet others with bleeding disorders Since I m in the outreach track I get to do a lot of programming with different chapters says the 22 year old from Provo Utah Talking about the different bleeding disorders is important she explains We re unifying the community A Primer on Advocacy The advocacy track formerly called the Future Leaders program teaches young people how to speak with elected officials and become better activists NYLI members then help run advocacy and legislative events for chapters We go through a variety of trainings then apply what we ve learned at a local and national level says Nikole Scappe 24 a college junior from Coraopolis Pennsylvania in her second year of the program She is also an advocacy intern NYLI has given her a foundation for training others With NYLI s advocacy track our goal is to manage an actual advocacy campaign for a chapter she says Focusing on Nonprofit Development The nonprofit development track shows the young adults how to run nonprofits by letting them serve local chapters in a leadership role Some sit on chapter boards others develop a fundraising or awareness campaign As a board president Ouellette plans board meetings and completes required paperwork He also works for US Sen Al Franken D MN He speaks with constituents and takes their concerns back to the senator s offices The nonprofit development track and its training on everything from fundraising to management has helped with both responsibilities There are many benefits to joining NYLI You

    Original URL path: http://www.hemaware.org/story/spotlight-nyli (2016-02-18)
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  • Building Your Retirement | HemAware
    much you ll need to save for retirement look at your budget says Tingom Figure out what you need to live comfortably Then subtract expenses that will not exist in retirement for instance your house and your car if they will be paid off by then Consider whether you plan to financially assist your children or grandchildren Allocate for additional costs such as co pays deductibles or other out of pocket medical expenses related to hemophilia another bleeding disorder or other chronic health conditions you have Once you have a number in mind add about 3 for each year until you retire to factor for inflation Then multiply that by the number of years you expect to live in retirement Your investments should provide that level of income without touching the principal each year Tingom says For example if you can live on 30 000 per year and expect to live 30 years in retirement you ll need to have about 1 million saved by then Building a retirement fund that will keep you comfortable and secure for a number of years typically entails a combination of retirement resources First enroll in an employer sponsored retirement plan such as a pension 401 k 403 b 457 b or Simplified Employee Pension SEP also known as a Simple IRA for small businesses If your employer matches contributions up to a certain level contribute at least enough to earn the full matching amount Once you ve begun contributing to the plan on a regular basis work to gradually increase your contributions over time even if it s in small incremental steps Homes says Next if you are eligible contribute to a Roth or traditional individual retirement account IRA suggests Homes The difference between Roth and traditional IRAs is when you pay taxes With a Roth you pay taxes on the funds before contributing them the funds grow tax free but you can withdraw money at any time With a traditional IRA you avoid taxes on the front end but when you withdraw the funds are taxable If you are 50 or older you can make catch up contributions to these plans to help boost your retirement savings quickly With the many options available it may be helpful for adults over 50 to consult a financial planner to formulate a strategy Don t forget to factor in Social Security determining how much you can expect to receive based on your age at retirement The Social Security website includes benefit calculators to help you set realistic expectations Social Security benefits can be drawn as early as age 62 but there are significant incentives for delaying until an older age Homes says The maximum benefit is achieved by delaying Social Security until age 70 Also remember to account for your health insurance coverage Before contemplating retirement people should look through all their financial resources to determine if they realistically have enough assets to retire in the way they want to retire Heider says If not

    Original URL path: http://www.hemaware.org/story/building-your-retirement (2016-02-18)
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  • Factoring in Factor X | HemAware
    or 1 of normal respectively Symptoms of FX deficiency are similar to factor VIII and IX deficiencies They include easy bruising nose and gum bleeds and joint bleeds Women may experience menorrhagia heavy menstrual periods first trimester miscarriages and postpartum hemorrhage Patients with mild FX deficiency can have excessive bleeding after trauma or surgery Those with severe FX deficiency can sustain serious and life threatening bleeds such as intracranial hemorrhage and gastrointestinal bleeds Inadequate treatment Until recently the standard treatment for FX deficiency has been fresh frozen plasma FFP Unfortunately that can only be administered in the hospital says Deborah L Brown MD hematologist at the Gulf States Hemophilia and Thrombophilia Treatment Center in Houston Texas Besides the process is slow taking up to several hours making routine prophylaxis impractical and inconvenient for most patients The level of FX that you can achieve with a plasma infusion is not that great she adds Further FFP contains other clotting factors as well You do get factors that you don t really need Brown says But they re in a so called physiologic concentration similar to levels in your body So the appropriate balance is there Side effects of FFP include fever allergic reactions and in rare cases lung damage she says A newer alternative is prothrombin complex concentrates PCCs which come in small vials The advantage of PCCs over FFP is that they can be administered at home It s a simple IV push over a few minutes as opposed to an infusion which takes hours Brown says The viral inactivation method for PCCs usually includes a solvent detergent step The track record for safety is very very good says Brown But PCCs have their downside Although manufacturers provide information on the amount of FX in PCCs each vial is not specifically labeled You don t have accurate dosing information Brown says In addition most PCCs contain four vitamin K dependent clotting factors FII FVII FIX and FX There s not a balance says Brown Patients must prevent FX levels from exceeding 50 There have been rare instances of clots developing after getting PCCs Brown cautions Coagadex clinical trials Results from BPL s phase III clinical trials of Coagadex paved the way for its approval In a multicenter international study of 16 people with moderate or severe FX deficiency nearly 83 of bleeds resolved with only one infusion of Coagadex Further the product s half life was approximately 30 hours The data were unveiled at the Hemostasis and Thrombosis Research Society s Scientific Symposium in New Orleans in April and published online It looked like the efficacy was quite good Brown says Nearly 99 of the subjects reported good or excellent results when treating bleeds The advantages of having a FX concentrate to treat FX deficiency include better prevention and control of bleeds with the option of home therapy Plus the amount of FX will be indicated on the vial so patients will know how much they re using Being able

    Original URL path: http://www.hemaware.org/story/factoring-factor-x (2016-02-18)
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