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  • Sled Hockey Puts Hemophilia on Ice
    after that Seven years ago I had my right knee replaced and last December I had my left ankle fused I felt like I was never going to be able to find something to play until a buddy of mine who plays in an amateur adult league picked up a flyer for the Rochester Mustangs and gave it to me Two weeks later I went to their board meeting and two weeks after that I was learning how to play Tell us about the players on your team We have 11 players on the team all with 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

    Original URL path: http://www.hemaware.org/print/1431 (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?quicktabs_story_page_tabs=0 (2016-02-18)
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  • Couple Shares Their Healthcare Book With President Obama | HemAware
    about these families We compiled interviews of people s journeys Some families were having no problems at all but there were also families with huge costs and insur ance carriers won t carry them There were families splitting up families trying to make the poverty level so they would qualify for MediCal or Medicaid What is the most important healthcare reform issue for the hemophilia community That insurance companies don t discriminate against high dollar high risk patients Also that employers who provide health insurance for their employees are not pushed by insurance companies to drop employees who cost the insurance companies too much I m thankful that President Obama does acknowledge that some insurance companies will do everything in their power to get rid of certain people How did you get the chance to meet the president and what did you discuss with him One of my boys qualified for the Make A Wish Foundation his wish was to meet the president My son my husband and I gave President Obama a copy of our book and described our situation He said that that was what the healthcare reform was for to help people like us Right now if you call up one of the big insurance companies and ask for insurance for a person with hemophilia you will come up with an automatic denial There has to be another way to deal with this These insurance companies are not giving a person with hemophilia the same opportunities that everyone else is given regarding healthcare What do you hope the president took away from your meeting I believe the hemophilia community represents what will happen if healthcare isn t reformed to everybody with other chronic health conditions such as diabetes We re the canaries in the coal mine Everyone

    Original URL path: http://www.hemaware.org/story/sharing-stories (2016-02-18)
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  • Young Man Teaches on Restored Fishing Schooner | HemAware
    as a sailor or a teacher There were a few times I got muscle bleeds and had to infuse but other than that everything went great What s a day aboard the Roseway like When we were in St Croix we held weekly academic programs for junior high students We used the ship to teach the kids about science ecology literature and physics as it pertained to their school curriculum We tried to incorporate community skills communication teamwork trust self worth respect and reflection Each program ran Monday through Friday for three hours a day When the kids arrived we would do some sort of interactive activity that would stress the community value of the day Then we would take the kids out sailing for three hours After the sails were set we would set up stations around the boat Every 20 minutes or so the kids would rotate to different stations Kate Wood What else does the Ocean School offer Summer day programs in Boston focus on maritime history sail training and community building It also provides expeditions for youth worldwide focusing on community service sail training leadership communications and natural history What will you take away from this experience I learned a lot about the importance of sailing The history of sailing and sailboats is ingrained in our past and culture My favorite memory is being in the middle of the Atlantic in the middle of the night steering the boat The only thing you can see is the back lit compass to keep your direction The smartest thing you can do as a person with hemophilia is stay in good physical shape and eat a healthy diet I ve been a Class V whitewater rafting guide a rock climbing guide an Alaskan zip line guide and a

    Original URL path: http://www.hemaware.org/story/sail-away (2016-02-18)
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  • Getting Ready for a Move
    and confirm that your child s Medic Alert bracelet includes current information adds Melinda Inzani MSW LCSW a licensed social worker in New Jersey who works with children and adults with chronic illnesses Ask your new HTC to help connect you to your new chapter Acquire ample medication Many times families contact us in an emergency because their prescription will not be accepted or has expired following their move adds Bob Robinson executive director of the Bleeding Dis orders Alliance Illinois in Chicago At least 30 days is ideal Swenson says Try to fill your prescription right before you move Give yourself a month to transition If you re moving internationally do your homework It is especially important to understand the 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

    Original URL path: http://www.hemaware.org/print/1418 (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?quicktabs_story_page_tabs=0 (2016-02-18)
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  • Getting Ready for a Move | HemAware
    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 having

    Original URL path: http://www.hemaware.org/story/getting-ready-move?quicktabs_story_page_tabs=1 (2016-02-18)
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  • Send page by email | HemAware
    Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood Safety Advocacy Community HemAware Blogs HemAware Videos HemAware Photos Chapters in Action Global Spotlight Community Voices En Español Need info Ask NHF Contact HANDI NHF s resource center for additional information on bleeding disorders Home Glossary Site Map Donate Advertise Privacy Policy Subscribe Contact Us Life Stages Infants Children

    Original URL path: http://www.hemaware.org/printmail/1411 (2016-02-18)
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