is named after the pair of doctors that first described the condition.
Ehlers-Danlos is even more uncommon than ON, and there was even
less information about it than there is about ON. Patients with
Ehlers-Danlos Syndrome were at that time often misdiagnosed, resulting
in inappropriate or unsuccessful surgeries that frustrated both
patients and physicians. This patient, Susan Stephanson, decided
to do something about it and started the Ehlers-Danlos Foundation,
which today functions much as we hope the NONF will soon function.
Susan has agreed to act as a consultant during this time of transition.
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
on the Board as a special consultant, and her internet-based support
group will continue to work cooperatively with the organization.
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.
David S. Hungerford,
to the National Library of Medicine, there were at least 329 articles
published in medical journals about osteonecrosis (ON) in 2004.
Their topics are quite variable including articles on adult-onset
and juvenile forms (Legg-Calve-Perthes), ON at different locations
(hip, knee, talus, shoulder, spine, pelvis, jaw), and as a complication
of other diseases and surgical procedures.
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
R. Urist awarded article on whether there is a genetic predisposition
for the disease (Zalavras et al., Clin Orthop, May 2004).
evaluation of use of Autologous (self-donated) bone-marrow cells
in the treatment of ON (Gangji et al., JBJS, June, 2004).
on whether pain predicts outcome in ON hips (pain in early stages
does not)(Belmar et al., Clin Orthop, Aug, 2004).
of a Multicenter study of patients with Legg-Calve-Perthes disease
(Herring et al., JBJS, Oct, 2004).
study of the effects of an anti-coagulant and a lipid-lowering
agent on the development of ON (Motomura et al., Arthritis Rheuma,
of the effect of a drug called alendronate in the treatment
of ON (Agarwala et al., Rheumatology, Nov, 2004).
of two surgical treatments (surface arthroplasty, metal-on-metal
resurfacing) for hip ON (Beule et al., J Arthroplasty, Dec.
of the use of bone morphogenetic protein (BMP) with core decompression
(Lieberman et al., Clin Orthopr, Dec, 2004).
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.
the fall of 1994, I was a busy wife, mother, and medical office
manager. Life was often hectic and as I raced through each day,
never did the concept of long-term chronic illness enter my mind.
That was something that always happened to other people, not to
me. As I locked up the office at the end of each day, bidding goodnight
to the last patient and my boss, I’d head for home, happy
with excitement at seeing my husband, family and friends once again.
Living in the so-called fast lane of suburbia America, I felt my
life was good.
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.
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
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!
Then, one wonderful day, I received an email from a doctor in Pennsylvania,
asking me to contact Dr. David Hungerford of Johns Hopkins University,
a doctor who somehow had heard about our group and wanted to meet
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.
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.
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 Willis (Volunteer)
Willis, the Associate Director of NONF, is also an ON survivor.
As a result of high dose steroids she took to treat leukemia in
2001, Nicole quickly developed osteonecrosis. Between 2002 and 2004,
she had both hips, a knee and a shoulder replaced, and still sufferers
from ON in several other joints. While going through treatment,
Nicole was easily able to find information about and support for
her leukemia, which helped her immensely to cope with the disease.
However, when she searched for information and support for her osteonecrosis,
she found very little. She needed help, but it wasn’t there.
After discovering NONF, she used this as her incentive to help NONF
better focus on patient issues.
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
chronic diseases. She has experience in program planning and evaluation,
survey development, database manage-ment, data analysis and many
other areas that will benefit NONF.
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.
is an excellent example of a “Win-Win”. On the one hand,
it provides an opportunity for the volunteer to help others in need
– especially for the relatively “unknown” disease
of osteonecrosis. On the other hand, it helps a foundation during
its early stages of growth to find people to help the foundation
to get things done.
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 firstname.lastname@example.org.
We would like
to thank Debi Ross for all the hard work she has done on the NONF
the survey on the following pages and
email to: email@example.com
mail to: Nicole Willis
3917 Cresson Street
Philadelphia, PA 19127