| A Brief History of our Organization |
Our group got its start back in late 1995, when I timidly ventured out onto the Web in the hope of finding at least one other person with AVN. Having just been diagnosed with it, and having been told that the disease was extremely rare, I was determined to find someone with whom I could talk to about it. Absolutely no one I knew had ever heard of it before, and neither had I. As for me, I was simply a wife, mother, homemaker, and medical office manager. Then, I got ill and developed AVN, caused by some powerful cortico-steroidal medications I was given for my illness. As a result, my entire world, and my family's worlds, were changed forever. Within the first two weeks of my venture out onto the Web with my little one-page "Marie's Breakfast Nook" offering, I did hear from someone else with AVN, a lovely woman in Long Island, NY, by the name of Judy Adolph. We struck up a correspondence, and within a few months, the two of us became official Community Volunteer Chat Hosts with AOL's Better Health Network We formed a chat group, inviting other AVN victims to join us. Within that first year, our little chat group numbered in the hundreds. It was clear that AVN was not truly all that rare anymore as more and more people found their way to us; our growth was phenomenal. Ours was truly the world's first support group for AVN victims, and for a good many years, the only one. Judy was also the leader of the Lupus community on AOL, and was greatly needed by her community. She went on to lead her own group, but has never strayed too far away from us! She remains an active member and a volunteer with us. By 1999, more than 4,500 people had either contacted me personally, and/or joined our chat group on AOL. At that point, I knew it was time to branch out. So, we next formed a chat group for ON/AVN, as we were by then calling it, on Yahoo, where we remain to this very day. Also in 1999, I was contacted by Dr. David Hungerford, of the National Osteonecrosis Foundation (NONF) and asked to become the (volunteer) Executive Director of the NONF, another all-volunteer organization. For the next five years, my groups on AOL and Yahoo did their best to help spread the word about the NONF, and to build up its membership. In addition to our entire group handing out hundreds of fliers that we created, I also advertised it continuously on our Web site, our message boards, and newsletters. Then, by the fall of 2004 it was becoming quite clear that the demand and need for a real patient support system, catering only to the patients' needs, problems, and concerns, was very apparent. Our group had grown so large and was continuing to grow at such a steady rate, that I found I needed the help of volunteers within our group. It became much too difficult to split myself between both organizations, so I stepped down from the NONF's director position. My wonderful sister-volunteer assistant, and organization's Vice President, and friend, Karen Arnold, and I decided to concentrate on our own group. We applied for official non-profit status, which was granted in 2005. At last, we were on our way! Today, we have nearly 2,000 registered members from all over the world. We have quite a few volunteers who, despite their pain and physical limitations, are working side by side with us to help make a difference for all those who suffer from this terrible ailment. Each and every one of our volunteers gives tirelessly of themselves to help make the world a better place for all those with ON/AVN. Already, we have seen some nearly miraculous events take place. Where at one time there was only a mere handful of Web sites that even mentioned ON/AVN, today there are hundreds. Where at one time only a few hundred new cases of ON/ANV were being diagnosed each year in the US, today we are seeing thousands each year, patients who are getting correct and accurate diagnoses. Only the good Lord knows how many others there may be, those who were or are misdiagnosed because their doctors are not familiar with this once so-called rare disease. But, we are seeing ever more ON/AVN patients finding their way to us. Often, we get more than 30 new people per month. Clearly, our group helped to bring ON/AVN out of the shadows and into the medical spotlight, where it deserves to be. Today, it is amazing how many 'newbies' who find us did so from a doctor's referral! We have made a name and a reputation for ourselves, and God willing, we will keep on keeping on. Now, our focus is also on our involvement in a new and important research project with The Hospital for Special Surgery, NY, NY. You may read all about it on our Research page. All of us here at the ON/AVN SGIA, Inc., have taken a huge leap of faith by starting this organization, and by keeping it going. I know that God will help us along the way and that He has been there for us all along. We have a very long way to go, and a lot of work to accomplish; but I also know that with God's help and the help of all those who hear our plea, we are going to do what we set out to do. We are here to help all those with ON/AVN to cope with it as best as they possibly can, and to help educate the world about AVN. And, God willing, we will get this new research project off the ground, and perhaps from it, find a cure. This group and all that it stands for is that important to us, and we hope and pray it is that important to everyone who finds their way to our site. |
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History
| "A support system for AVN patients by AVN patients.... Getting better, one step at a time." E-mail: avninfo@avnsupport.org |
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" We will keep on keeping on" |
Osteonecrosis - Avascular necrosis support
New research is the key to solving the many puzzles of AVN
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