The majority of people with ON have only one or two joints involved. About 3% of

Approximately 15-20,000

new patients are

diagnosed with

osteonecrosis each year

in the United States.

Since these patients

have a normal life

expectancy,

there are an estimated

500,000 people living

with this disease today.

We are setting out to transform the Foundation. This will occur as volunteers assume a greater role in the organization. NONF has always been dedicated as a service FOR the patients. However it has been organized and directed by physicians. The transformation will result in an organization that is not only FOR the patient but also OF the patient and BY the patient. We believe that the way forward for the NONF consists of identifying, mobilizing and equipping volunteers to become involved in the organization. Our past executive directors have been volunteers. Marie Shanahan, the last executive director, has stepped down from the role to devote her full efforts to the patient advocacy web site and internet-based support group that she has so successfully pioneered, The ON/AVN Support Group International. She will remain

We are currently without an executive director. Nonetheless, we continue to do what the foundation has done in the past, providing information to patients and physicians. In addition to executive director, we need volunteers at all levels, patient recruitment, grant writing, fundraising, web develop-ment. If you have time and interest, we can probably find something for you to do.

The old goals of the NONF remain valid. This transition represents new and renewed efforts to achieve those goals and add new ones, in line with the needs of our members. Ultimately, the Foundation aspires to influence the pace of discovery into the causes of ON and to put patients in touch with specialists who can offer the best possible current treatments, and who are involved in pushing back the frontiers of knowledge so that better prevention and treatment methods are available in the future. Everyone who has a desire to participate in the growth of our foundation is welcome. Participation can take many forms, and this will be the subject of future communications from the NONF to you, its members.

Sincerely,

David S. Hungerford, MD
Founder, NONF

Although a majority of the articles were clinical studies, case reports, and reviews, there were 26 basic science articles. This represents an increase in the number of studies that are dedicated to increasing our understanding of the disease and its diagnosis and treatment. There were several outstanding articles published in 2004 which may ultimately impact on the prevention and treatment of ON. Some examples include:

• A Marshall R. Urist awarded article on whether there is a genetic predisposition for the disease (Zalavras et al., Clin Orthop, May 2004).
• An evaluation of use of Autologous (self-donated) bone-marrow cells in the treatment of ON (Gangji et al., JBJS, June, 2004).
• An investigation on whether pain predicts outcome in ON hips (pain in early stages does not)(Belmar et al., Clin Orthop, Aug, 2004).

• A report of a Multicenter study of patients with Legg-Calve-Perthes disease (Herring et al., JBJS, Oct, 2004).
• A laboratory study of the effects of an anti-coagulant and a lipid-lowering agent on the development of ON (Motomura et al., Arthritis Rheuma, Oct, 2004).
• A study of the effect of a drug called alendronate in the treatment of ON (Agarwala et al., Rheumatology, Nov, 2004).
• A comparison of two surgical treatments (surface arthroplasty, metal-on-metal resurfacing) for hip ON (Beule et al., J Arthroplasty, Dec. 2004.
• A study of the use of bone morphogenetic protein (BMP) with core decompression (Lieberman et al., Clin Orthopr, Dec, 2004).
• A basic science study evaluating differences between different types of corticosteroids and the development of ON (Miyanishi et al., Rheumatol, Dec, 2004).

It is important for us to not only be aware of the results of cutting age clinical and basic science research but also to understand these within the context of what is already known. Look for this spot in future newsletters to stay in touch with the most recent advances in ON research.

Then, illness struck. Like a thief in the night, it overtook me and within a matter of a few months, my life had changed forever. Gone was my job, gone were most of my friends, gone was our contented home life, and gone were my dreams of a happy and peaceful future. Once illness walked in the door, I had to learn to rebuild my life all over again, step by painful step.

After surviving a near-fatal illness in 1995-1996 of the colon and small intestine, I developed osteonecrosis, a.k.a. avascular necrosis, in several major joints. It turned out that the massive doses of steroids I was given for my illness were the culprits; I survived the illness, but my skeleton did not. Left alone in my house for four years, unable to walk or drive, I turned to my computer - my ‘life-line to the world’ and reached out to others with this strange disease. I created a simple webpage called “Marie’s Breakfast Nook,” and never in my wildest dreams did I ever expect to hear from anyone! Almost immediately, I heard from a woman from Long Island, NY. She, too, had AVN and was very eager to talk with me. That was just the beginning. Within six months, we had grown from a group of two to nearly 70. My simple webpage mushroomed into a nearly 20-page site, which was called “The ON/AVN Support Group International.”

Within a year, our group had swelled to nearly 500 people who hailed from all over the world. We were hearing from men, women, teenagers, and even parents of younger victims, and all of them virtually were saying the same thing: “I thought I was all alone in this!” In the first two years of our group, we had amassed an army of nearly 3,000 people, all of them suffering from AVN. The thing that always tickled me the most is that all of this was accomplished without my ever having to leave my house!

On a balmy day in July 1999, Dr. David Hungerford, Dr Lynne Jones and Barbara Kelly flew up from Baltimore to my home in New York, and we had a wonderful meeting. On that historic day, I finally realized that there was hope again, that someone who really knew about AVN and understood it, also cared very deeply for its victims. Dr Hungerford told me that he was amazed at my group and what I had managed to accomplish. He also told me that he and a few other doctors had begun a group called the National Osteonecrosis Foundation, and that they needed to reach patients and doctors alike. I agreed to help. The ON/AVN Support Group International and the NONF websites exchanged links and I was asked to become the Executive Director of NONF. I was the Executive Director for five years, but had to step down this past January when our own group became an official non-profit organization. It is an honor that I cherished, and held very dear. It gave me the official stamp of approval to keep on gathering people, to keep on helping to educate and encourage them, and to give them hope.

More than anything in the world, we AVN’ers, as I call us, need hope. This cruel affliction takes away much more than just our joints and bones: it takes away inner peace and joy as it depletes our physical abilities and strength. It takes away the freedom of independence, and in so many cases, it often destroys relationships as well. It is tough enough for a couple to deal with family finances today without having to face expensive tests, operations, rehabilitation therapy, and medications. Often the strain of an illness such as ours is just too much for a relationship to bear, tearing it apart at the seams.

Today, our once-online only ‘ON/AVN Support Group International’ has evolved into the ON/AVN Support Group Int’l Association, Inc. as an official non-profit organization with a membership spanning the globe. We can be reached via the internet at http://osteonecrosisavnsupport.org or by regular U.S. mail at Box 118, 8500 Henry Avenue, Philadelphia, PA 19128. All those who are looking for support, comfort, and know-ledge about AVN are welcome to joint us.

Written by Marie Shanahan

Nicole, who has a master’s degree in public health, currently works as an epidemiologist in clinical research. Her clinical experience includes research in oncology, vaccines and

In her personal life, Nicole enjoys volunteering for both the Leukemia and Lymphoma Society (LLS) and the Liberty Golden Retriever Rescue. As an LLS volunteer, she serves as a patient ambassador speaking at fundraising events. She also serves as an LLS first connection volunteer, telephoning newly diagnosed leukemia patients to talk with them, answer their questions, and offer them comfort and hope. As a Golden Retriever Rescue volunteer, she fosters dogs until they find a new home, she conducts home visits to ensure safe, pet-friendly environments for the adopted dogs, and has developed the group’s new volunteer information brochure. Nicole will be a great asset to facilitate NONF’s future growth and success.

The NONF is searching for an Executive Director to oversee the daily operation of the Foundation. But it doesn’t stop there. We also need individuals to help with secretarial functions, patient membership recruitment, membership services (new applications, renewals, database), grant writing and/or fundraising, web management, newsletter – content management, marketing/publicity; accounting; and local outreach (Speakers Bureau & Local Patient Meetings). The home office is currently in Baltimore. But with the internet, volunteers can live almost anywhere. If you are interested in finding out more, please contact us at 410-532-5985 or ljones3@jhmi.edu.

We would like to thank Debi Ross for all the hard work she has done on the NONF website!

Please complete the survey on the following pages and

email to: nicole.willis@gmail.com
or
mail to: Nicole Willis
3917 Cresson Street
Philadelphia, PA 19127