Supreme Court Says Isolated Human Genes Cannot Be Patented
WASHINGTON (AP) — The Supreme Court ruled Thursday that companies cannot patent parts of naturally-occurring human genes, a decision with the potential to profoundly affect the emerging and lucrative medical and biotechnology industries. The high court’s unanimous judgment reverses three decades of patent awards by government officials. It throws out patents held by Salt Lake [...]
Superhero D.A.D: Delightfully Awesome Dude
On my husband’s Twitter profile, he describes himself as “Father, Entrepreneur, Righteous Dude, Caped Crusader Fighting the Evil Private Health Insurance Empire.” I’d testify those all true assessments of him. He’s a pretty good guy. I think most fathers in the bleeding disorders community are. They fight for justice for their kids just as hard [...]
Family Fun Weekend – Bleeding Disorders Association of NE New York
On Saturday, May 25th, the Bleeding Disorders Association of Northeastern New York hosted their annual Family Fun Weekend. The weekend was filled with fun, fitness, entertainment, exhibits and education for the whole family. The FitFactor Program of HFA sponsored the physical activities and a yummy interactive nutrition session. The video below captures some of the [...]
Your Choice. Your Voice.
Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment [...]
CSL Behring Doses First Hemophilia A Patient in Part 3 of Global Phase
King of Prussia, — CSL Behring has dosed the first patient in Part 3 of its AFFINITY clinical trial program, which is now in phase III. AFFINITY is an open-label, non-randomized, multi-center study evaluating the efficacy, safety and pharmacokinetics of its novel investigational recombinant coagulation single-chain factor VIII (rVIII-SingleChain) for the treatment of hemophilia A. [...]
Talking to Your Provider About Pain
People living with a bleeding disorders know a thing or two about pain. Many with arthritis report having to wait until their body “loosens up” before they can begin their day. There’s also the pain you may feel after a particularly busy day when you’ve been on your feet, and that joint that always bothers you [...]
Community Voices: Taking Control of Your Health
“The only thing standing between you and your goals are the excuses you keep telling yourself as to why you can’t achieve them.” – Unknown Maintaining a balanced diet, staying physically fit, and managing stress are important for everyone, especially those living with a bleeding disorder. A regular, safe exercise program protects the joints, and [...]
Prior Planning Prevents Persistent Problems
A couple of years ago, we decided on a whim to take a drive to the top of Pikes Peak on Labor Day weekend. Standing at 14,115 feet, it’s one of Colorado’s highest mountain peaks and in July 1893, Katherine Lee Bates wrote the song “America the Beautiful” after admiring the view from the summit. [...]
Quinoa and Summer Vegetable Salad
Memorial Day marks the unofficial start to summer-cookout season. Don’t show up empty-handed. Consider making this healthy and refreshing summer salad that is filled with protein, vegetables, lots of nutrition, and guaranteed to make your friends and family ask for the recipe. Yield: 6 servings (serving size: 2/3 cup) Ingredients: 1/2 cup chopped green onions (about 4) 1 [...]
Essential Oils for Spring and Summer
Essential oils are widely used in topical lotions, soothing baths, aromatherapy and in a wide variety of herbal remedies. Essential oils are derived from the distillation of leaves, stems, flowers, bark, and roots of plants. They can affect the body’s physiological system directly or indirectly. The warmer months is the perfect time to use light, [...]
Assisting and Advocating for the Bleeding Disorders Community
