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  • Apply for NHF’s National Youth Leadership Institute | HemAware
    advocacy They are paired with a staff liaison who offers guidance support and feedback NYLI members will attend NHF s Annual Meeting to receive training participate in panel discussions and attend sessions They will also present educational sessions at other bleeding disorder conferences advocate on behalf of the bleeding disorders community at Washington Days and have opportunities for internships within the bleeding disorders community If we want to protect the future of the bleeding disorders community we need to invest in it says Ayana Woods NHF s director of education We hope that giving young people a good foundation in education and advocacy will result in having great chapter leaders and community advocates who will continue the work of improving the lives of people with bleeding disorders The NYLI program is open to young adults with strong leadership po tential and who are living with a bleeding disorder or who have a sibling with a bleeding disorder To apply download the application or e mail Christie VanHorne NHF manager of education The deadline to apply is August 17 View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles 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 Related Most Viewed 1 Lead On 2 Inhibitor Connections 3 Paying for College When You Have a Bleeding Disorder 4 Osteoporosis In Kids With Bleeding Disorders 5 Pondering Prophylaxis The Pros and Cons of Infusion Devices Pumping Iron Head Bleeds and Hemophilia Dogs Priceless Contribution to Hemophilia Research Making Better

    Original URL path: http://www.hemaware.org/story/apply-nhfs-national-youth-leadership-institute (2016-02-18)
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  • HemAware Wins Awards | HemAware
    Awards from Folio magazine It won a Bronze Award for the Spring 2011 cover story Growing Older Proactively Spring 2011 and the magazine as a whole won a Silver Award in the Association Non Profit publication category At NHF we are constantly striving to bring the most compelling information on bleeding disorders to our community says John Indence NHF vice president of marketing and communications When organizations such as ASHPE and Folio recognize us it shows that we can achieve standards that make HemAware appealing to an even larger audience Read articles from the award winning issues of HemAware Spring 2011 Summer 2011 Fall 2011 View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles 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 Related Most Viewed 1 Halloween Hit 2 Storming the Hill 3 Coming Soon Bleeding Disorders News on Your iPad 4 Planning Ahead for

    Original URL path: http://www.hemaware.org/story/hemaware-wins-awards (2016-02-18)
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  • NHF Hosts 2nd Annual Spring Soiree | HemAware
    York was master of ceremonies Rosemary Holmberg RN longtime executive director of the Hemophilia Center of Western New York was honored for her 39 years of service to the bleeding disorders community with the Inspiration Award NHF CEO Val D Bias who was a patient at the treatment center when he was a child spoke of Holmberg s personal dedication to the patients she still calls her boys and their families When Bias was 12 and learning to self infuse Holmberg let him practice sticking a vein in her own arm That is just one example of the dedication and commitment to the bleeding disorders community that she has shown throughout her career he said Baxter Healthcare Corporation received the Corporate Leadership Award for its longstanding support of NHF s programs and chapters It has been the National Presenting Sponsor of the Hemophilia Walk program since it began in 2008 with five Walk sites Now with Baxter s ongoing support the Walk program has grown to 23 sites Baxter also has provided more than 4 5 million to the NHF Baxter Clinical Fellowship program which seeks to increase the number of physicians providing care to people with bleeding disorders The program provides mentorship and clinical training for physicians at selected HTCs The evening concluded with a live auction hosted by Alex Borstein Each attendee received a scarf created by fashion designer Nicole Miller for NHF s Victory for Women program We were gratified that so many people have taken the mission of NHF into their hearts says Mary Ann Ludwig vice president of development for NHF When celebrities like Alex Borstein Mike Woods Patrick McMullan Fred Ferguson Sarah Steele and Nicole Miller all come out to support our organization and hear our stories we know that we ve done a

    Original URL path: http://www.hemaware.org/story/nhf-hosts-2nd-annual-spring-soiree (2016-02-18)
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  • Triathlon Triumph | HemAware
    Know the Medical Risks Heidi Lane PT DPT PCS of the Intermountain Hemophilia and Thrombosis Center in Salt Lake City Utah doesn t encourage triathlon training for her patients because of the risk of overuse injuries during training and races Triathlons are typically run on cement which is harder on the joints says Lane Your body will need to be able to tolerate that Mark Spalding Although biking is easier on your joints crashes or collisions can occur Despite taking precautions Spalding fell off his bike last year and had thumb surgery Even swimming considered a safe sport for people with bleeding disorders has risks The concern with swimming is overuse and incorrect technique Lane says Both elements of the triathlon can put undue strain on your joints Lane strongly advises hiring a coach It s worth the investment to meet with experts who can help with technique she says But first visit your physical therapist PT Your PT and a coach can help design a proper workout routine based on your current fitness level and time to prepare for the event Lane says A coach can explain which equipment you ll need for each leg of the race Your training regimen which builds stamina while minimizing overuse injury risk will be unique But Lane offers a few universal tips First go slowly Increase the distance for each component by no more than 10 weekly Regularly discuss your progress with your PT being honest about how much you are training and how you feel And get plenty of rest Spalding agrees I go hard for one to one and a half weeks then take it easy he says Ripley s rest routine includes elevating his knees after a run and icing them Finally it is crucial that you talk to your physician about treating before you begin to train Establishing an infusion routine and a game plan in case of injury should be top priority You need to have a treatment plan during training and on race days Lane says Proper nutrition and hydration should also be discussed with your physician says Lane Water is essential The amount you should drink depends on the intensity of your workout your own body s needs and other factors Also find out what fluids replace electrolytes lost through sweating Consult a health professional about the amount that s right for you and how you can best replace the fluids electrolytes and other bodily essentials that you lose through sweat says Lane That is vitally important if you have von Willebrand disease and are taking desmopressin Stimate or DDAVP because drinking too much water may cause you to lose sodium This condition called hyponatremia can be very dangerous Again Lane says you must talk to your doctor to determine how best to stay hydrated Ripley and Spalding find satisfaction in training for and competing in triathlons At the end of a race I feel like I ve accomplished something incredible Ripley says I know

    Original URL path: http://www.hemaware.org/story/triathlon-triumph (2016-02-18)
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  • Government Issues Latest “Healthy People” Report | HemAware
    ages 6 11 64 for 12 to 19 year olds and 48 for adults A 2005 study by the Centers for Disease Control and Prevention CDC found that teens with bleeding disorders are almost twice as likely to be overweight as their unaffected peers Excess weight strains muscles and joints and contributes to heart disease diabetes and other complications The report showed the number of people under 65 with health insurance remained steady at 83 But rates for blacks and Hispanics were lower than the national norm 81 and 69 respectively Further while 76 of Americans have a primary care provider only 73 of blacks and 65 of Hispanics do A positive trend though was found in children s immunization rates which rose from 73 in 1998 to 78 in 2008 nearing the goal of 80 set 10 years ago Primary care physicians will play a vital role in helping HHS meet its 2020 goals by counseling patients about healthy behaviors The four primary goals for Healthy People 2020 are Attain high quality longer lives free of preventable disease disability injury and premature death Achieve health equity and eliminate disparities Create social and physical environments that promote good health for all Promote quality of life healthy development and healthy behaviors across all life stages Too many people are not reaching their full health potential because of preventable conditions said Howard K Koh MD MPH HHS assistant secretary for health in an October 2011 press release Given the renewed emphasis on prevention outlined in the Affordable Care Act we have a unique opportunity to help all Americans improve both the length and quality of their lives During the second decade of the 21st century individuals with bleeding disorders can make small lifestyle changes that can reap huge benefits such as starting

    Original URL path: http://www.hemaware.org/story/government-issues-latest-healthy-people-report (2016-02-18)
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  • Washington Days 2012 | HemAware
    and Prevention has proposed reducing the number of HTCs conducting surveillance from 135 to 50 in fiscal year 2013 Data collected at HTCs are used to inform treatment decisions perform research studies and provide information about HIV and hepatitis transmission The information also helps monitor blood product safety Reducing the number of HTCs conducting surveillance would limit the amount of data HTCs collect decreasing the quality of research Delegates also asked their representatives in Congress to support the ACA Several ACA reforms have improved the lives of people with bleeding disorders by eliminating lifetime caps and requiring health insurance coverage for children with pre existing conditions View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles 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 Related Most Viewed 1 NHF Establishes New Young Professionals Group 2 HTC Funding Update 3 NHF Walk Program Celebrates 5th Birthday 4

    Original URL path: http://www.hemaware.org/story/washington-days-2012 (2016-02-18)
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  • Researcher Support Critical to New Drug Development | HemAware
    to search for a cure for bleeding disorders The NHF Baxter Clinical Fellowship has been awarding fellowships to physicians since 2003 This program provides academic hospitals the funding and time to develop the future of clinical physicians who specialize in bleeding disorders treatment To provide the continued expert care patients receive from their hematologists NHF has graduated 17 physicians from the program who have continued to work in the field of bleeding disorders NHF also supports drug advancements through its Medical and Scientific Advisory Council MASAC MASAC held a Consensus Conference on the Impediments to Clinical Research in November 2010 to discuss how to make sure new products are made available to consumers A questionnaire was also distributed to patients at NHF s Washington Days in February 2011 about their involvement in a clinical research study About half the patients had not been involved in clinical trials because none were offered at their HTC The other half had participated in a study and took pride in having helped develop better treatments In 2012 NHF will publish an article in a peer reviewed professional journal on the discussion that took place at the Consensus Conference This will allow all members of the bleeding disorders community to provide input that ensures that more advanced products can make it to market and improve the lives of people with bleeding disorders Neil Frick MS is the vice president for research and medical information at the National Hemophilia Foundation View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles 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

    Original URL path: http://www.hemaware.org/story/researcher-support-critical-new-drug-development (2016-02-18)
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  • Fight the Flu | HemAware
    components one influenza B virus strain and two influenza A virus subtypes including the 2009 H1N1 virus New Fluzone Vaccine May Reduce Risk of Bleeds Flu shots come in several forms FluMist a nasal spray made from live weakened flu viruses that do not cause disease is recommended for healthy people ages 2 to 49 including women who are not pregnant In contrast flu shots made from killed viruses are given with a needle typically in a muscle in the arm They are preferred for people with immune suppression including those with HIV However this population of patients may experience a weaker immune response to the vaccine New this year is Fluzone Intradermal Influenza Virus Vaccine which is given through the dermal layer of the skin It may be ideal for people with bleeding disorders because it decreases the risk of bleeds at the injection site Made by Sanofi Pasteur the new vaccine has been used in more than 40 countries It contains a microinjection system with an ultrafine needle 90 shorter than the typical needle used for intramuscular flu shots In clinical trials Fluzone Intradermal provided the same degree of immunity against influenza as intramuscular flu vaccines It is recommended for adults 18 to 64 years old Because Fluzone is injected into the skin it produces more redness swelling itching and hardness at the injection site These side effects are generally mild to moderate and subside in 3 7 days As with other flu vaccines that contain egg protein Fluzone Intradermal is not recommended for people who are allergic to eggs Fluzone High Dose which contains four times more antigen than its regular vaccine is now available to seniors 65 and older It is expected to prevent flu complications by triggering a greater immune response If you haven t

    Original URL path: http://www.hemaware.org/story/fight-flu (2016-02-18)
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