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We’ve all heard of osteoporosis – a common disease as we get older that results in bones that are not dense enough.  But have you ever heard of severe malignant osteopetrosis?  Unless you’re one of only 200 families in the entire country dealing with this devastating diagnosis… you probably haven’t.  But severe malignant osteopetrosis is a very rare bone disease. It afflicts babies and young children, its symptoms are devastating, and the financial burden of treatment options weighs heavily on the families it affects.  Thanks to physicians like Dr. Paul Orchard, one of the experts in the U.S. in the use of bone marrow stem cell transplants needed by malignant osteopetrosis patients, life expectancy for these young patients is remarkably improved.  And thanks to patient advocates like Paul and Barbara Wersten, who fought for the life of their baby Ryan, support organizations like the Ryan Wersten MIOP Foundation are available to patient families.  Currently there is also an FDA-approved treatment called ACTIMMUNE® (Interferon Gamma-1b), marketed by Horizon Pharma Inc., helps delay time to disease progression for patients with SMO. Because of these efforts, and ongoing research families dealing with SMO have more hope today.

Website: http://www.curemiop.org

With a world full of adventure, choosing the perfect vacation spot can be a real challenge. That’s why The Balancing Act put together this list, of the best travel destinations to visit outside of the U.S. this summer in 2024. Cancun, Mexico Cancun is considered one of the most beautiful cities in the world. With […]

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Best Travel Destinations This Summer in the U.S.

Summer is meant for vacations, whether your ideal trip involves a big city, nature, national parks, small-town getaway, or relaxing on a beach. Deciding the best summer vacation can include several factors including affordability, weather, and interests. Here is a list of the best travel destinations in the U.S. for you and your family this summer in 2024. Miami, […]

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Recap of 2024 People's Choice Awards

The people have spoken! The 2024 People’s Choice Awards have come and gone. The general public voted on awards based on this year’s best movies, music, television, and pop culture. The award show aired on NBC, Peacock, and E! from Barker Hangar in Santa Monica, California. Simu Liu hosted the event, known as the Marvel superhero Shang-Chi. […]

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