archive-org.com » ORG » H » HEMAWARE.ORG

Total: 1100

Choose link from "Titles, links and description words view":

Or switch to "Titles and links view".
  • NHF’s ACT Initiative helps strengthen chapters | HemAware
    about successful programs run by other chapters They also are schooled on the basics of fundraising For instance they learn how to host an annual appeal and how to work with NHF s grant writer to apply for outside industry grants Some find out how to participate in the annual Hemophilia Walk others learn how to enlarge the Walk they ve already begun and still others reach beyond their families for donors and participants Further participants discover how to transform Walk donors into regular donors for their chapters Raising all boats Kristin Hokoyama is development manager of special events and national Walk event manager for NHF She has observed rapid growth in the Walk program in the past few years Twenty three chapters with new chapters bringing in some of the most money she says have raised more than 8 million The New York City chapter for instance is the biggest single donor raising 250 000 in 2013 But even smaller chapters can make a difference The Rocky Mountain chapter nearly doubled its efforts raising 26 000 in 2012 and 40 000 in 2013 And by increasing participation in the Walk that chapter is bringing people together who might otherwise have difficulty connecting because of the rural nature of the community Building enthusiasm among boards of directors about the changes was another ACT priority Executive directors and presidents who felt inspired by Annual Meeting and leadership trainings sometimes came home to find that their boards of directors didn t understand or accept their new ideas Quickly NHF brought chapter board members into the fold At dozens of board development retreats in the past few years NHF hired facilitators to help board members and staff work together to make their ideas a reality All of these efforts have strengthened chapters They are providing more programs and reaching more people with bleeding disorders fulfilling their and NHF s mission Now that the financial foundation has been laid chapters need to build on it Before the ACT Initiative a lot of chapters were underwater struggling to continue their camp funding getting people to events surviving financially says Rotellini Today chapters are more stable but there s more work to be done she says Balancing act Keeping things in balance is critical to the success of NHF s chapters says Rotellini That means balancing funding from inside and outside the bleeding disorders community and from inside and outside the pharmaceutical industry It also means finding balance on chapter boards of directors and between chapters HTCs and the national office It s about being sustainable Rotellini says We want them to be there for decades to come Traditionally chapters have received almost all their money from the specialty pharmacy and pharmaceutical companies that make clotting factor and other products Although that funding is essential there is room for other revenue sources says Rotellini That doesn t diminish industry funding It just increases outside funding she says This is how we will grow Chapter boards benefit

    Original URL path: http://www.hemaware.org/story/fostering-growth (2016-02-18)
    Open archived version from archive

  • Camp: India | HemAware
    of control painful so most of the time you re just supposed to ice and elevate it Those kids definitely live a really rough life Who goes to the camp Perseus encourages a camper learning to self infuse I worked with the Hemophilia Federation of India to promote the camp and identify the kids who were the worst off and had the greatest need The average age was around 14 Some of the kids will be returning this year I d like to start developing some leadership skills among them If I can teach 14 to 17 year olds how to self infuse they can turn around and teach a 12 or a 13 year old So I hope that we ll have a wider age group as we grow How is your camp different from the camps you ve attended in the US There s not much similarity in what we do and how much we push the kids These kids aren t getting factor year round we can t push them the way we push our kids here There aren t the facilities But I tried to mimic the camp atmosphere and concentrate on the core feeling and the friendships that develop at camp What do you get out of running the camp I m inspired by the guys I met over there One of the campers probably around age 20 would come to camp and spend the day with us He would then hop on his motorcycle and go to work the night shift at a restaurant so that he could support his family Sometimes I would hear him come back really early in the morning and go to bed for a few hours He usually worked during the day but he really wanted to come to

    Original URL path: http://www.hemaware.org/story/camp-india (2016-02-18)
    Open archived version from archive

  • Gearing Up for a Family Spin
    size frame for your height and adjust your bike to minimize stress on your joints The bicycle seat and handlebars have to be in the correct position Otherwise you will irritate your joints Craig says If you haven t liked biking in the past it may be because your bike was not set up properly making it uncomfortable If you have wrist or elbow problems your PT may be able to adjust your handlebars to accommodate them she adds There are many types of bikes to choose from Hroma recommends hybrids which combine features of mountain bikes and road bikes But it s really personal preference and what you want to experience that should guide you she says Bailey steers her patients away 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

    Original URL path: http://www.hemaware.org/print/1415 (2016-02-18)
    Open archived version from archive

  • 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?quicktabs_story_page_tabs=0 (2016-02-18)
    Open archived version from archive

  • Send page by email | HemAware
    Health Wellness 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

    Original URL path: http://www.hemaware.org/printmail/1423 (2016-02-18)
    Open archived version from archive

  • Prioritizing Balance: It Starts With You
    to determine how much time to devote to others and to themselves Because every life is different there is no 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

    Original URL path: http://www.hemaware.org/print/1423 (2016-02-18)
    Open archived version from archive

  • 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?quicktabs_story_page_tabs=0 (2016-02-18)
    Open archived version from archive

  • A Focus on Inhibitors | HemAware
    18 years old and Men with Hemophilia with Inhibitors for those 18 and older The sessions provided a mix of practical education on topics ranging from the importance of treating bleeds early to prevent joint disease to how to work with your child s school to set up necessary accommodations Doctors nurses physical therapists and social workers from hemophilia treatment centers across the US led the sessions Each track is planned for its intended audience says Christa Dardaganian director of educational strategy at NHF The session on sports and exercise for teens is different than the session on sports and exercise for adult men because some teens with inhibitors have the added pressure of wanting to join school team sports The teen track also had a session on when and how to disclose a bleeding disorder to friends and classmates All tracks included a session on pain management a vital topic for people with inhibitors because of the frequency and long term impact of their bleeds These sessions focused on different types of pain medication alternative pain management techniques and concerns about developing addiction to opioid pain medications Taylor Smith Dominique Millette and Alicia Gulledge left to right share their perspectives during the Miami siblings panel discussion Each of the English speaking summits featured a plenary session with an interactive quiz on the history of hemophilia hosted by Guy Young MD director of the Hemostasis and Thrombosis Center at Children s Hospital Los Angeles The summits also included two panel discussions one for unaffected siblings to share their stories and another about meeting the challenges of dealing with inhibitors People with hemophilia with inhibitors and their families have unique educational needs says Dardaganian Each year we hold the summits we try to find new ways to meet those needs Darryl

    Original URL path: http://www.hemaware.org/story/focus-inhibitors (2016-02-18)
    Open archived version from archive



  •