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  • Planning Ahead for Hemophilia | HemAware
    meeting The highlights of the strategic plan include strengthening the evidence based data for hemophilia care generating evidence based clinical practice guidelines promoting adequate reimbursement for comprehensive care and strengthening the national workforce for hemophilia care both at HTCs and local chapters NHF plans to incorporate the recommendations into its own five year strategic plan The meeting was funded through the NHF Research Catalyst Fund supported by Novo Nordisk Summit Attendees Aetna Pharmacy Management American Thrombosis and Hemostasis Network Bayer HealthCare Pharmaceuticals Inc Baxter BioScience Biogen Idec Cascade Hemophilia Consortium Cavarocchi Ruscio Dennis Associates LLC Craig M Kessler MD MACP CSL Behring David Espinosa Express Scripts Federal Hemophilia Treatment Center Region IX Food and Drug Administration Grifols Inc Gulf States Hemophilia and Thrombophilia Center Hemophilia of Georgia Hemophilia of Iowa Hemostasis Hemophilia Thrombophilia Treatment Center Children s Hospital of Michigan Indiana Comprehensive Health Insurance Jorge de la Riva Kedrion Biopharma Inc Maternal and Child Health Bureau Miriam Goldstein Mountain States Regional Hemophilia and Thrombosis Center National Heart Lung and Blood Institute National Institutes of Health Novo Nordisk Inc Patient Services Incorporated Paul Brayshaw PPTA Region III Hemophilia Treatment Centers Robert R Montgomery MD Terry Tenbrunsel The Children s Hospital of Philadelphia The Hemophilia Alliance US Bioservices an AmerisourceBergen Specialty Group Company World Federation of Hemophilia 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 HemAware Wins Awards 3 Genotyping Education

    Original URL path: http://www.hemaware.org/story/planning-ahead-hemophilia (2016-02-18)
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  • Bowling for Your Body | HemAware
    weighing 8 pounds Bailey suggests Further shoulder and elbow problems may make putting a spin on the ball difficult Bailey says They may have to bowl a straighter shot The lower body also takes a hit during bowling Bowlers put a lot of strain on the knee and ankle of the leg opposite the arm with which they bowl says Bailey You are always landing on that same leg so all your weight is on it Players with lower joint problems can alter their technique to lessen the toll bowling takes on their bodies Bailey says Try taking either a shorter approach to the line or bowling right from the line Many leagues recognize the different needs of their players and allow such accommodations To prepare for the rigors of the game try incremental lunges which work your buttocks and leg muscles Start with mini lunges and progress to full lunges as tolerated Bailey suggests Talk to your physical therapist or someone on your healthcare team about what exercises will work best for you and whether you need to infuse beforehand Rice infuses an hour before practice or competition Light hand weights or resistance bands can help you do bicep curls tricep extensions and wrist curls All exercises should be done on both sides of your body A wrist brace for support and injury prevention is an essential piece of equipment for every bowler Bailey advises Braces can also be worn on problem joints such as the knee or ankle They can be purchased at sporting good stores or from online retailers Talk to your PT about the type of brace best suited for you Playing It Safe Bleeding Disorders Sports and Exercise an NHF publication rates bowling a 2 or moderately risky for people with bleeding disorders With the

    Original URL path: http://www.hemaware.org/story/bowling-your-body (2016-02-18)
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  • Biking Across America | HemAware
    of anyone with hemophilia having undertaken an effort of this kind so the challenge was out there to become the first to do it I decided to raise money for Save One Life an organization that provides help to people with hemophilia in developing countries I contacted the founder and president Laurie Kelley and she loved the idea By the ride s end we d raised more than 45 000 Sponsorship for the tour was provided by Baxter I am also a board member of the Committee of Ten Thousand COTT I wanted to do something to promote COTT s concept of establishing a national hemophilia memorial Each day of the tour was dedicated to a community member who d lost his or her life to AIDS or hepatitis C I posted photos and dedications on Facebook at the start of each day s ride How did you manage your bleeding disorder during training and on the ride I ve had very few bleeding episodes arise because of the cycling For many years I was using factor on an on demand basis With the increase in activity level needed to ride at the level required to cross the country I transitioned to prophy which I maintained while on the Ride Across America Interestingly I never had a bleed during the seven weeks of the trip What were the highlights and challenges of the ride The ride overall was really not that difficult But there were some individual days that were challenging such as the climb up Mt Rushmore ascending Teton Pass and crossing the Continental Divide at 9 600 feet There was that 120 mile ride into Casper Wyoming into a headwind that also sticks out in my mind The best part of the ride was the money we raised to support Save One Life The way in which the hemophilia community has responded to the ride effort has been hugely gratifying and encouraging too I never thought I d ever evolve into a motivational speaker after so many years of laboring under the stigma of HIV and living as quietly as possible as a result But now I m speaking at hemophilia events around the country and it s a real joy What advice would you give someone with a bleeding disorder who wants to get into long distance cycling A good local bike shop and the local cycling club together are the best places to learn what to do and what equipment to use No one should ever go out and jump on a bike and try to ride 100 miles Start slowly ride short distances until you build up your strength As always consulting with one s doctor about a fitness routine is just common sense especially for those with underlying health conditions like hemophilia For more information about the Ride Across America and other upcoming fundraising tours contact Barry redsaleen97 yahoo com Pictures of the Ride Across America and more information can also be found on

    Original URL path: http://www.hemaware.org/story/road-warrior (2016-02-18)
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  • Genotyping Education at Washington Days | HemAware
    advisor on Thursday March 8 2012 at the Crystal Gateway Marriott Hotel in Arlington Virginia Some of the advantages of genotyping mentioned in the presentation include predicting which patients will develop inhibitors antibodies to infused factor protein screening the most suitable candidates for clinical trials tailoring drugs to specific mutations and determining carrier status in women so they can receive prenatal counseling and special care during labor and delivery if they are expecting a child with a bleeding disorder NHF wishes to thank Novo Nordisk for providing an educational grant for the 2012 Washington Days event 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 HemAware Wins Awards 3 Storming the Hill 4 Coming Soon Bleeding Disorders News on Your iPad 5 Planning Ahead for Hemophilia The Pros and Cons

    Original URL path: http://www.hemaware.org/story/genotyping-education-washington-days (2016-02-18)
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  • HTC Funding Update | HemAware
    to preventing CDC from reducing the number of HTCs it supports NHF Board member Barbara J Gordon LCSW has participated in NHF s Washington Days for a decade often with her twin sons Sam who has hemophilia and Max who does not They have been fortunate to meet with Sen Reed almost annually in his DC office Sen Reed has listened to the concerns raised and over the years has increasingly tried to help the bleeding disorders community and her sons HTC at Hasbro Children s Hospital in Providence Rhode Island says Gordon But this year we had a much bigger challenge with the Obama budget proposal to cut funding for the HTCs Gordon says Thankfully Sen Reed came through for us in a big way this time NHF has recognized Sen Reed at Washington Days by presenting him with the L Michael Kuhn Award for outstanding leadership and advocacy on behalf of the bleeding disorders community Sen Reed has been a true champion of our community says Val D Bias NHF CEO With his seat on the Appropriations Committee he has been able to reverse the funding situation for HTCs For that we are grateful To support Sen Reed s efforts on the Appropriations Committee NHF worked with Sen Whitehouse D RI on a Dear Colleague letter seeking other senators support for restoring funds to the HTCs Individuals and families participating in NHF s Washington Days in March 2012 can take credit for the eight senators who co signed the letter to the Appropriations Committee Senators Coons DE Gillibrand NY Merkley OR Reed RI Shaheen NH Stabenow MI Whitehouse RI and Wyden OR The House of Representatives still needs to pass its FY 2013 appropriations bill The House and Senate will then need to craft and pass a final

    Original URL path: http://www.hemaware.org/story/htc-funding-update (2016-02-18)
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  • NHF Walk Program Celebrates 5th Birthday | HemAware
    the Louisiana Texas border north up to Waco west to El Paso and everything south down to Mexico A second Walk in Austin allowed some families to attend without having to travel or spend the weekend in a hotel The first Austin Walk Compton said attracted about 225 participants this year they are expecting close to 400 The total number of expected participants for both Walks is 1 400 Brad Benne executive director of the Rocky Mountain Hemophilia Bleeding Disorders Association in Bozeman Montana says his chapter has experienced challenges similar to the Lone Star Chapter His chapter encompasses all of Montana and Wyoming many members travel long distances for fundraising and educational events We are small but mighty Benne says The chapter held its first Walk on September 8 2012 At first Benne was somewhat apprehensive about the small chapter s ability to generate enough interest and volunteers to plan and participate in a Walk Then he realized the potential benefits were too great to ignore Our board of directors saw it as another way for our chapter to sustain itself he says The Rocky Mountain chapter has held successful fundraisers before but nothing on the scale of the Walk Most of our fundraisers bring in about 2 000 he says If our Walk raises 20 000 that will be a huge success for us The chapter in fact raised more than 25 000 The Blood Brothers team raised more than 4 500 for the Montana Walk Walks bring more than money to the chapters They can add members too Walks are a great way for families to get more involved with our chapter Compton says Families with newly diagnosed children can feel overwhelmed at educational events but Walks allow them to participate she says In addition kids with bleeding disorders meet each other and families bond New families have gotten to know us through our Walks and then will start coming to our other events says Compton Walks also help make bleeding disorders more visible in the community My goal of the Walk is to spread awareness of bleeding disorders to every corner of Montana and Wyoming Benne says The reasons are practical as well as aspirational For many chapter members the hemophilia treatment center in Denver Colorado is an 11 hour drive People wind up going to local hospitals and emergency rooms that aren t as knowledgeable as they could be about bleeding disorders Benne says The Walk is a great opportunity for our chapter and community to get their stories out there Five more chapters will be hosting Walks in 2013 Bleeding Disorder Foundation of Washington in Edmonds Hemophilia Association of the Capital Area in Fairfax Virginia Hemophilia Foundation of Oregon in Portland Hemophilia Association of San Diego County in San Diego Sangre de Oro Inc Hemophilia Foundation of New Mexico in Albuquerque and the Midwest Hemophilia Association in Leawood Kansas The Walks are supported by National Presenting Sponsor Baxter Pacesetter Sponsor Bayer HealthCare Official Sponsors

    Original URL path: http://www.hemaware.org/story/nhf-walk-program-celebrates-5th-birthday (2016-02-18)
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  • NHF Expands Online Offerings | HemAware
    while other content was inspired by local chapters and NHF s Annual Meeting sessions We wanted a site that is inviting to all girls and women no matter what their age or condition Thomas says We hope when women land there they ll say I m so happy to have found this site This is what I m struggling with and feel validated Keeping Up With Healthcare Policy Life transitions are not the only factors that drive people to the Web for information Sweeping policy changes namely the federal Affordable Care Act signed into law in March 2010 also prompted NHF to bolster online education efforts The American Plasma Users Coalition A PLUS a group of national patient advocacy organizations that includes NHF addresses the unique needs of patients with rare diseases who use plasma protein therapies In 2011 A PLUS collaborated with Georgetown University s Health Policy Institute to create the State Exchange Project NHF serves as both the fiscal agent and project manager of the program One component of the project is a four part webinar series that educates chapter leaders and state policy advocates The first in the series titled Essential Health Benefits What State Advocates Need to Know was held in March 2012 followed by the second in May State Exchange Update The goal is to make sure the healthcare needs of those with rare diseases including bleeding disorders are considered as healthcare reform is implemented in each state More than 140 advocates participated in the first two webinars The remaining two webinars will address other key aspects of implementation such as federally facilitated exchanges and Medicaid expansion Webinars are an effective way to inform large numbers of advocates from diverse locations and groups says Michelle Rice NHF s director of public policy The project s main goal is to assist advocates in their state advocacy efforts by providing strategic guidance and helping to craft a unified message We are saying The health reform implementation process is complex with many moving parts Here is where advocates need to focus their attention Collaborating with others and presenting a shared common message help to raise our voices above the noise and ensure that the needs of those we serve are not lost in the process Rice adds The webinar series available on the NHF Web site provides the chapters with a cost effective method of sharing the information with their local community Gas prices are high and the economy is down so it s hard to travel Rice explains Webinars are flexible enough that if someone has a schedule conflict they can watch the program later They also give us a more expanded audience and the ability to distribute more timely information The healthcare reform series comes on the heels of a previous webinar series offered in partnership with the Specialty Healthcare Benefits Council and MedSpan titled Managed Care and Hemophilia Opportunities for Most Cost Effective Care This series provided education for managed care payers many of whom

    Original URL path: http://www.hemaware.org/story/online-engagement (2016-02-18)
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  • Falling Risk of Medications | HemAware
    and hypertension says Lambing Diabetic neuropathy or nerve damage can affect the lower legs and feet causing a loss of sensation For people with arthritic knees or ankles from years of joint bleeds walking can become compromised If they re not able to move well and then they can t feel well with their feet when they re walking they may not lift them appropriately she says They re at risk for falling In addition the very medications you re taking to lower high blood pressure can also contribute to falling Antihypertensives can cause hypotension low blood pressure when a patient tries to get out of bed or moves from a sitting to a standing position The blood rushes from the head to the feet and you can pass out says Lambing We teach a lot of patients to get up slowly Sitting on the edge of the bed for a few minutes before you stand up in the morning can help HTC and Home Safety Your hemophilia treatment center HTC is a good place to start if you re concerned about falling inside your home Typically a physical therapist performs a home safety assessment to identify problem areas and offer solutions We make sure there are no throw rugs they could trip over or carpets curling up at the edges Lambing says The bathroom is also evaluated Hand rails a raised toilet seat and a tub chair are often recommended The house itself may be the biggest obstacle though says Lambing Older men with hemophilia have less mobility in their ankles knees and hips So climbing stairs becomes a problem she says Sometimes we will have a conversation about whether it s time for them to change to a one level home In some cases improvements may be needed

    Original URL path: http://www.hemaware.org/story/falling-risk-medications (2016-02-18)
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