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National Hemophilia Foundation
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders through education, advocacy and research.
Telephone: 212-328-3700
http://www.hemophilia.org

CFC Code: 12002
IRS EIN Number: 13-5641857
AFR: 15.9% What's this?

Dr Metz

As a physician, Dr. Richard Metz knows what it's like to be in a difficult situation. Yes, Michael, his son has hemophilia. Dr. Metz has witnessed firsthand the issues — medical and logistical — that come with the disease.

Yes, he's served on National Hemophilia Foundation board. He's seen the struggles and the triumphs of promoting interest in a condition that the public doesn't understand, or want to understand.





Tue, 12 May 2015

Skip the gym, now you can exercise the do-it-yourself way at home using bodyweight exercises. Bodyweight exercises, which include pushups and situps, build muscle, burn calories and boost your heart health. Plus,  your workout won’t cost you a dime. Such exercises require only the weight of your own body, rather than barbells or other weight training equipment. These are all good reasons why the American College of Sports Medicine predicts that bodyweight training will be the No. 1 fitness trend in 2015.

For people with bleeding disorders, bodyweight exercises can be beneficial. They increase strength, and the stronger your muscles, the better they can protect your joints from bleeds.

Follow your PT’s lead

Before beginning a bodyweight exercise program, check in with your health team at your hemophilia treatment center (HTC), especially your physical therapist (PT). The staff can help you plan a workout that matches your abilities and won’t tax your joints.

“Your PT knows you and knows whether, for example, squats are going to be difficult for you because of knee or ankle problems,” says Kim Baumann, MPT, of the Center for Bleeding and Clotting Disorders at the University of Minnesota Fairview Medical Center in Minneapolis. You will also learn how to do each exercise correctly. “You need to practice proper body mechanics to avoid injury,” she says. “For example, if you do a squat and let your knees go past your toes, you’re putting tremendous pressure on your knees.“ Such pressure can cause joint injuries or even bleeds.

There are many different bodyweight exercises you can do, each of which can be modified to match your fitness and abilities. First, focus on exercises that are comfortable for you. “As you adapt to your new workout, you can vary it to make it more challenging,” says Heidi Purrington, PT, of the Hemophilia and Thrombosis Center at Phoenix Children’s Hospital in Arizona. For example, if you’re new to exercise, you may need to start with functional exercises. These include sit to stand, reaching into cupboards, stepping sideways along the counter in the kitchen, or leaning forward and to the sides and back while sitting. Your PT can help you decide how many to start with and what goals you should set

For a simple exercise you can do every day, Purrington recommends stand-up/sit-downs. With your hands at your sides, sit in a chair, stand up and then sit back down. Repeat. You can vary the difficulty by using a higher or lower chair, not using your arms to help and increasing the number of repetitions you perform.

“You can also use bodyweight exercises to improve your balance,” says Baumann. Single-leg stands involve lifting one foot, bending your knee and holding your foot a few inches off and perpendicular to the floor for a half-minute or so. Once you feel comfortable doing them on a solid surface, try standing on a pillow. For a real challenge, do them with your eyes closed. You can even do single-leg stands while brushing your teeth.

Modifying and adjusting

Bodyweight exercises can also be modified to work around problem joints. “There are lots of ways to do strength training, even if you have limitations,” says Baumann. For instance, if you like pushups but have bad elbows, adjust how low you go or do them against the wall. The same goes for how low you squat.

Go slowly when you get started. Together with your PT, plan when to take each exercise to the next level. Too much too soon may cause an injury that knocks you out of commission.

If you have the time, do a whole workout every other day. Otherwise, do a little bit of your routine every day; dividing it into chunks of time that fit your schedule. Try alternating between upper-body exercises like shoulder shrugs, lower-body exercises such as squats and core exercises, which include situps and planks, says Baumann.

Work some variety into your workout. That way, you keep things interesting as you continue to challenge yourself. Purrington shares pages of exercises with some of her patients. She recommends they choose one or two exercises from each page for each session. Just be sure to give each major muscle group at least a day between workouts.

Although bodyweight exercises require no special equipment, you will need a good pair of shoes. Running or cross-training shoes provide joint support and prevent falls. Also, consider a yoga mat, especially if you like to exercise outdoors or on a slippery hardwood floor.

Look for the first signs of progress in just a few weeks. Soon you’ll be doing a few more repetitions of each exercise. In addition, everyday activities like walking to the park with your kids will become noticeably easier. In a few months, exercise will become a more natural part of your daily routine, says Purrington. Plus, your mental health will improve. “The more you exercise, the better you will feel about things in general,” she says.

Learn More

For videos of several bodyweight exercises, visit Mayo Clinic.

For a comprehensive selection of beginner bodyweight exercises, visit Ace Fitness’s Exercise Library.

Tue, 28 Apr 2015

In each issue of HemAware, we spotlight people in the bleeding disorders community. Here, we talk to Skylar Lobdell, a 21-year-old from Elmore, Vermont, about his passion for distance running and his experience living abroad. Skylar has severe hemophilia A.

When did you start running?

I started running in the sixth grade when I joined my middle school cross country and track teams. I’d played baseball and soccer, but to be honest, I wasn’t terribly good at either. Since I could run around the bases or across the field quickly enough, I thought I might be a little better at just running as a sport. Once I began running longer distances, I came to really enjoy it. Although running is an individual sport, you bond with your teammates very intensely during training. I really enjoy this aspect of the sport, and for me it is very important to run with other people. Being stuck with someone on a long run gives you little choice but to get to know each other.

How do you manage your bleeding disorder while engaging in athletic activity?

I need to make sure that I am doing my prophylactic treatments on schedule and paying attention to what my body is telling me. If I feel like I might be developing or am about to develop a bleed, I treat right away, and then I take a little time to rest. It’s also important to plan your schedule carefully so that you can maximize the effectiveness of treatments. If I know that I have a big event coming up—a longer or more difficult race, for instance—I will adjust my schedule so that I infuse right before the event.

You’re currently studying abroad at the University of St. Andrews in Scotland. How did you prepare for that with a bleeding disorder?

Traveling with hemophilia requires careful consideration. Access to care in the UK is relatively easy, because as a student, I qualify for the National Health Service (NHS), which is able to provide me with clotting factor. Before coming over, I did some research to find out if I would be covered by the NHS while studying, and located the nearest hemophilia treatment center (HTC). Locating HTCs is important no matter where you are traveling. Whenever I go to a new place, I always find out where the closest HTC is in case of emergency. I also always bring an ample supply of clotting factor, as this can often be difficult to obtain in a foreign country.

Are there any differences between care and treatment in the US and Scotland?

The only major difference is that because the UK uses the NHS instead of private healthcare providers, the government has contracted a single company to provide clotting factor. This meant that I did have to change products when I came over. But I have been perfectly satisfied with the treatment I am on now. The system seems to work quite well.

Do you have any advice for anyone your age who is concerned about participating in sports while having a bleeding disorder?

Don’t think of yourself as being limited by your bleeding disorder. Obviously there are some sports that are probably not a good idea for a person with hemophilia. These are mostly high-impact sports with a relatively substantial risk of injury, even for people without a bleeding disorder. I’ve found that as long as I am careful about what I do and stay on top of my treatment plan, it is relatively easy to overcome any concerns or perceived limitations. If something seems interesting, get out there and give it a try!

Tue, 28 Apr 2015

Nearly 350 members of the bleeding disorders community gathered in Washington, DC, February 24–27, for NHF’s annual advocacy event, Washington Days. The event gives people with bleeding disorders and their family members an opportunity to meet with their elected representatives to discuss issues that are critical to the bleeding disorders community.

This year, NHF asked attendees to advocate on three issues. The first was maintaining funding for the federal hemophilia programs at the Maternal and Child Health Bureau and the Centers for Disease Control and Prevention. The second was supporting potential legislation to have clotting factor paid separately, rather than in the bundled payment, for skilled nursing facilities (SNFs). The last was gathering sponsors for the Patients’ Access to Treatments Act (PATA), which would protect clotting factor from being moved onto a specialty formulary tier that would require patients to pay exorbitant cost sharing.


Sen. Chris Murphy (D-CT) shares a
moment with 8-year-old Devin Banks
of Weston, Connecticut.

Wednesday night, attendees received helpful training before their Capitol Hill visits the next day. NHF’s public policy team and lobbyists provided an in-depth presentation of the issues, a short “dos and don’ts” video and tips on using social media to connect with lawmakers. That was followed by a lively question-and-answer period.

To meet the needs of its young adult community, NHF launched the Youth Advocacy Summit for 18- to 24-year-olds. The group discussed how to advocate and take responsibility for themselves and their bleeding disorder at home, at school and at work. The new endeavor was sponsored by a Local Empowerment for Advocacy Development (LEAD) grant from CSL Behring.

Chapter leaders from states with multiple chapters gathered to discuss how to effectively work together on local issues affecting their community at the Regional Advocacy Center Luncheon, sponsored by Novo Nordisk.


A few inches of snow didn’t faze the
Massachusetts advocates as they
rallied for their first meeting of the day.

After the visits, advocates enjoyed a State Advocacy Recognition dinner. It put the spotlight on successes made by local chapters in their state advocacy program. NHF is grateful to Novo Nordisk for its support of the dinner.

“It’s important for the bleeding disorders community to advocate at the national level, but state advocacy is becoming increasingly important,” says Michelle Rice, NHF vice president for public policy and stakeholder relations. During the state advocacy training, chapters got tips on working with state legislators to protect the community’s access to care and affordable medications in the changing healthcare environment.


NHF CEO Val D. Bias urged advocates
to share their personal stories during
Thursday’s keynote address.

Since NHF advocates met with their elected officials in February, the PATA bill has been introduced in the House by Reps. David McKinley (R-WV) and Lois Capps (D-CA). As of April 22 it had 66 co-sponsors. Rep. Aaron Schock (R-IL), the congressman who was planning to introduce the SNF legislation, has since left Congress. NHF’s Washington-based staff has been meeting with many of the legislators who expressed an interest in introducing the bill. The SNF bill should be introduced in the House in May.

“When you all come together and speak with one voice, you can accomplish great things,” said NHF CEO Val D. Bias to a packed room of attendees at Washington Days 2015.

Tue, 28 Apr 2015

As many as 2 million American women have bleeding disorders and do not know it, according to the Office on Women’s Health of the US Department of Health and Human Services. Many women with bleeding disorders only learn of their diagnoses after complications from childbirth, injury or surgery. However,  the National Hemophilia Foundation (NHF) has long worked toward earlier diagnoses to help young women achieve better future outcomes.

“It would be good for any providers who come into contact with young women to understand the symptoms of bleeding disorders,” says Patrice Thomas, MS, MSW, former manager of education at NHF.  She was the organizer for the NHF-Centers for Disease Control and Prevention (CDC) College Health Project. She now serves as program services director at the Hemophilia Foundation of Michigan in Ypsilanti. “There are ways to train these doctors to diagnose young women, especially before they start having children,” says Thomas.

Through this collaborative project, NHF educated healthcare providers at several college campus health clinics. The focus was on preparing providers to recognize the symptoms of bleeding disorders in young women and refer them to hemophilia treatment centers (HTCs) for timely, accurate diagnosis.

Reaching young women

In a 2010 NHF survey of 1,243 women ages 18 to 24 across the country, researchers asked where they would seek care if they thought they had symptoms of a bleeding disorder. Approximately 20% said they would seek care at a college health clinic. Further, of the 2% of respondents who had been diagnosed with a bleeding disorder, 24% had received care at a college health clinic.

Based on those results, NHF organizers targeted their efforts accordingly. ”Young women with symptoms often turn to their college health clinics for help, so that seemed a good place to start,” says Thomas.

The NHF-CDC College Health Project targeted women’s health clinics on four college campuses: Florida International University (FIU) and University of Miami (UM), both in Miami; Michigan State University (MSU) in East Lansing; and University of Pennsylvania in Philadelphia. HTC staff facilitated training for providers at each college health site. The training included the basics of bleeding disorders, challenges faced by women with bleeding disorders and assessing women with specific symptoms of a bleeding disorder. NHF provided pretests and posttests that measured changes in the college health providers’ knowledge. After the educational training sessions, personnel at the college health sites were asked if they had adopted any new policies for screening women for bleeding disorders. They were also asked if they had witnessed an increase in identified women who had then been referred to the HTC near campus for further testing.

Reaping results

One of the most important results of the project was simply building connections between the college health clinics and the HTCs nearby. “Many HTCs are located on or near college campuses. But this type of education and interaction with college health services had not been done before on the campuses we contacted,” says Patti Rhynders, PhD, MPH, MCHES. She is a consultant who served as a liaison between NHF and the college health centers. “College healthcare providers are eager to be involved, to increase their knowledge of women’s bleeding disorders so they will be able to identify and screen at-risk women,” she adds.

Working with college health centers, Rhynders and other organizers learned that most of the healthcare providers had limited awareness of educational resources about women’s bleeding disorders. In addition, few of them specialize in women’s health. As a result, NHF chapters, HTCs and local college health services have an opportunity to work together to raise awareness among college women and the healthcare professionals who care for them, Rhynders says.

Many of the successes of the program were anecdotal, Thomas says. For instance, the MSU health clinic reported that staff referred a number of women to the local HTC.

NHF continues to prioritize early diagnosis for women with bleeding disorders, says Kate Nammacher, MPH, NHF’s director of education. Through a renewed partnership agreement with the CDC, NHF will target women ages 18 to 25 with an educational web portal about bleeding disorders. “We plan to focus on finding and developing partnerships with colleges, universities and other organizations to address the issue of bleeding disorders among young women,” Nammacher says.

Tue, 28 Apr 2015

I attended the National Hemophilia Foundation’s (NHF’s) 12th Workshop on Novel Technologies and Gene Transfer for Hemophilia at Georgetown University in Washington, DC, on October 24–25, 2014. Held approximately every other year since 1996, the workshop invites more than 100 leading researchers and clinicians from across the world to present their progress with new treatments and gene therapy in the field of blood disorders.

Organized by co-chairs Glenn Pierce, MD, PhD, and Katherine High, MD, and NHF’s Research and Medical Information Department, the workshop was dedicated to ­discussing the hard science behind these innovative therapies. This large-scale “journal club” covered several central themes, including subcutaneous therapies, longer-lasting­ factor products and inhibitor treatment alternatives. It also covered gene therapy models, clinical trial data, and the immunological consequences of new therapies.

The two-day workshop was an ­academic marathon for the 50 presenters. Seeing the connections between these sometimes obscure projects made me realize that the scope of medical research on hemophilia was much wider than I expected. One experiment used inhibitor-prone dogs as test subjects, while another explored injecting viral vectors into the retina. With the rapid-fire pace of the presentations, I came to understand how each study served a specific role in contributing to developing a cure for hemophilia.

Although the workshop put academia, not psychosocial or medical issues, on center stage, the same camaraderie that exists between patients and caregivers in NHF’s Annual Meeting roundtable sessions was evident in that Georgetown conference center. Many of these researchers had collaborated with each other over the past 20 years, regularly citing each other’s publications in their brief presentations.

As both a patient and someone pursuing a career in the health field, I felt incredibly humbled to catch a glimpse of this separate sphere of the bleeding disorders community.

New therapies

The progress of new subcutaneous therapies, a relatively painless injection into the fatty area just below the skin’s surface, to treat hemophilia A and B, including those with inhibitors, could offer a prophylactic treatment solution for those with difficult veins or medical ports. With the buildup of scar tissue at my usual infusion sites, I saw the appeal of subcutaneous therapies not only for myself but also, more importantly, for young kids with medical ports.

Possible treatment alternatives for hemophilia patients with inhibitors were also explored. Researchers from Biogen, CSL Behring and Novo Nordisk discussed the science behind their new prolonged half-life factor VIII (FVIII) and factor IX (FIX) products. The methods generally consisted of fusing the recombinant FVIII or FIX proteins to a molecule that extends the factor half-life by protecting it from being degraded in the bloodstream.

Gene therapy defined

As a potential alternative to intra­venous infusions, gene therapy swaps a “bad gene” for a “good gene” by inserting an engineered piece of genetic material (DNA or RNA) into specific target cells in the body. To deliver these genes, researchers package the good genes into a “viral vector,” an inactivated virus that transports the gene into healthy cells without provoking an unwanted immune response.

Although gene therapy trials are succeeding in patients with severe hemophilia B, they are not yet being performed on those with hemophilia A. Simply put, FVIII is a bulkier and less stable protein than FIX, making it more difficult to manipulate in the laboratory. As FIX gene therapy research continues to progress, we should see further development in FVIII research.

One of NHF’s greatest strengths is its ability to bring groups together. Continued collaboration at venues like this workshop is the key to improving existing therapies and developing a cure for hemophilia.


The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.

Your support enables us to fund vital research and provide key educational programs and public policy initiatives to help people with bleeding disorders such as hemophilia and von Willebrand disease.

RESEARCH

  • NHF Career Development Awards promote research endeavors of established investigators and are awarded to scientists conducting basic, pre-clinical and clinical research. NHF has granted 23 Awards since 2000.
  • NHF/Baxter Clinical Fellowships exclusively sponsored by Baxter Bioscience is provided to physicians who are interested in the sub-specialty of bleeding disorders treatment. 24 fellowships have been awarded since 2003 and will provide the future of physicians caring for people with hemophilia.
  • Judith Graham Pool Postdoctoral Fellowships are awarded to scientists who have recently completed a doctoral, postdoctoral or residency training program. Their research is focused on biochemical and genetic aspects of bleeding disorders and provides funding to ensure the interest and future of researchers in bleeding disorders. 76 researchers have been awarded fellowships since 1972.

ADVOCACY

  • The state advocacy team has participated on various panels aimed at educating consumers and providers about the Affordable Care Act (ACA) and how it may impact those with bleeding disorders. These trainings reached consumers in more than 15 states, including but not limited to Indiana, Nebraska, Idaho, South Carolina, Texas, Florida, Washington & Oklahoma.
  • The NHF Insurance & Reimbursement Conference is designed to educate social workers and key insurance advocates about issues surrounding insurance and reimbursement in both the private and public payer markets. More than 55 participants attended this conference in 2011.
  • The state advocacy team created a "Personal Health Insurance Toolkit" designed to assist consumers in evaluating their health insurance options. The toolkit is comprised of a glossary of health care terms, Health Plan Comparison Guide, Health Plan Comparison Worksheet and a Personal Health Stat Sheet. The toolkit was rolled out to NHF chapter leaders at a series of regional trainings. 48 chapters were provided with training on the use of the toolkit.
 

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