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This fundraiser ended on 09/01/14

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Avriel, a dancer, is determined to fight AVN with regenerative medicine -- repairing hips instead of replacing them, including her own.

Please visit my new GiveForward fundraiser here:! No one with Avascular Necrosis (AVN) should have to have to have a hip replaced in an era of regenerative medicine.   That is the philosophy of the CURE AVN Foundation.   This is what Avriel decided in January of 2012 when she was diagnosed with AVN and told that her life of dancing was over.  She was determined to find another way... Borne out of this young dancer’s struggle to combat this condition, The CURE AVN Foundation seeks to empower and educate patients and doctors with the most cutting edge breakthroughs in regenerative medicine applicable to bone regeneration in the effort to advance and develop a regenerative cure. The CURE AVN Foundation, led by Avriel, has a mission to support patients in finding effective treatments and to enable targeted scientific investigations and collaborations that further new approaches to bone regeneration.  It also advocates for the realization of a regenerative solution for all degenerative orthopedic conditions. Because no one should be told there is no way. When Avriel was diagnosed, she was devastated and shocked.  There had been no sign of illness... only a month of slight pain.  It could not be a lost cause.  She knew the body wants to live and thrive...  Had dedicated years of study to healthy nutrition and conscious living.  So she refused to accept that her bone could not heal or that science could not find a solution.   She found hope in the world of stem cell science, even though few practiced it and there were practical complications (since it is not covered by insurance and those who practice are met with beaurocratic and regulatory challenges).   She wanted to find safe, scientifically plausible solutions...  Over the next year and a half she hunted for the most promising discoveries, immersing herself in the world of stem cells, growth factors, growth proteins, and bone biology.  Facing skeptics, naysayers, and the trauma of being partially immobilized on crutches… she held to the hope that a treatment was out there, inspired only by the pioneering work of a few in the field of bone regeneration and clues found in medical journals, studies, and stories.   She consulted specialists, studied bone biochemistry, and sought out the leading thinkers on AVN to keep track of emerging practices.  She worked with doctors, innovators, and medical advisors to conceptualize a viable approach to treating late stage AVN – building on treatments practiced on early stage AVN or other bone conditions.  The desire to cure her own AVN became a cause to help others.  While she raised money for an innovative treatment out of the country she began to conceptualize how the Cure AVN Foundation could be useful to others in need.  So no one would have to go through what she went through alone.   Because AVN is a condition that does not get the attention it deserves, and that can be cured if intelligent and passionate people come together... it is a condition that can prove how brilliant minds and collaborative stem cell science can change the field of medicine entirely. AVN is a pernicious disease and silent invader.   It is a condition where the blood supply to bone becomes obstructed and the bone starts to die.  As the bone dies it collapses, leading to cartilage and joint degeneration and arthritic pain.  Many are forced to use crutches or wheelchairs who were used to running only months before.   It affects almost 50,000 a year, mostly those who are in their prime, young and active, and most without warning. Even major athletes have seen their careers ended by AVN -- such as Bo Jackson.   It affects those for whom a hip replacement can mean the end of a career, a dream, a way of living healthfully, and those who would need multiple replacements over time (as the lifespan of a replacement is 7-10 yrs maximum).  Most only know they have it when it is too late -- when they are deemed late stage and the bone deforms. ​ AVN is barely understood.  It has no major research effort behind it, no major advocate, and no major funding or support system.    Those afflicted are met with more questions than answers, and no appealing alternatives.  And yet it is a condition with enormous promise to spear head the application of regenerative medicine, and one that can affect treatment of so many other conditions.  In recent years a handful of doctors in the US have begun offering basic stem cell therapy for early stages… for late stages (when the disease is usually detected) there are no leading practitioners or practices. Stem cells offer true hope for AVN, but since no stem cell therapy is covered by insurance, most patients are forced to choose replacements that don't best serve them based on finances alone.  Doctors hands are tied, waiting for clinical studies that are prohibitively expensive.  Many hospitals wont even let their doctors practice stem cell therapy, favoring the traditional practices which come with enormous financial benefits.   The CURE AVN Foundation wants to change all of that. When Avriel was faced with few doctors who could help her in the US, she went elsewhere. With the help of an amazing support team, she raised money for a breakthrough surgery using her own cultured osteoblasts and mesenchymal stem cells, performed by a stem cell surgeon in India.  Building on a previously successful procedure, Avriel worked with a host of highly respected specialists to revise and improve the protocol, based on sound scientific principles and studies. We still wait to see what the results were of that treatment.  In the meantime, Avriel continues to hunt down the most promising cutting edge alternatives to help others and in case there is need for more treatment.  This is a tough condition and it may be that more than one attack is needed to win a war.  But a life with your own hip is worth the fight. Avriel’s hope was that her journey would help pave a path for others.  Not just help herself.   The CURE AVN Foundation believes that people can be repaired, and doesn’t want anyone to be told that the science is too regulated, too scary, too far away, or too expensive.  The science is evolving rapidly, and every day brings new opportunity. The Foundation seeks to become a hub of information, advocacy, action, and support for those who see the great promise of this future.  The CURE AVN Foundation believes that by funding targeted research, creating advocacy, awareness, and new investigative studies based on sound scientific advances that we can more rapidly and safely realize a day when hip replacements for AVN are no more.  This has to be a grassroots effort, including passionate researchers and doctors who get the vision.  The Foundation also hopes to help patients find safe solutions that are scientifically sound.  No one fighting AVN should make desperate choices because they feel trapped, intimidated, or alone. The CURE AVN FOUNDATION works to reveal the most cutting edge therapies and develop affordable, safe, precise methods of adopting them.  The CURE AVN Foundation is dedicated to finding novel treatments for AVN and to revising regulatory measures that keep doctors from exploring them. It is dedicated to generating an international effort to solving this disease using intelligence, innovation, and courage. Giving to the CURE AVN Foundation means that you are giving someone their life back in so many ways...  and that you are committing to a change in healthcare and medicine.  You are fueling major breakthroughs in science. Your efforts could save much more than the 50,000 AVN affects.  It could help millions afflicted with Arthritis, bone defects, and bone disease. And you are giving someone like Avriel her ability to dance back. Only with collaboration, passion, and persistence can we make change. Don’t let Avriel and others like her be forced to lose their hips in an era when we can save them.  There is another way.

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