Breakthrough - Osteogenesis Imperfecta Foundation

Breakthrough
The Newsletter of the
Osteogenesis Imperfecta Foundation, Inc.
Editor: Bill Bradner
Contributing Writers: Anna Lennarston,
Jamie Kendall, Hariett Patterson, and Heller
An Shapiro.
Breakthrough is published quarterly by
the nonprofit Osteogenesis Imperfecta (OI)
Foundation, Inc. Opinions expressed are those
of the authors and do not necessarily reflect
the official position or policies of the Osteogenesis
Imperfecta Foundation, Inc.
Because each person’s body and response
to treatment is different, no individual should
indulge in self-diagnosis or embark upon any
course of medical treatments without first consulting
with their physician or a qualified medical
professional familiar with their medical history.
A one-year subscription is free. To add your
name to the mailing list, write to
bonelink@oif.org or request it through our online
store at www.oif.org.
Executive Director
Heller An Shapiro
hshapiro@oif.org
Director of Communications & Events
Bill Bradner
bbradner@oif.org
Director of Finance & Administration
Tom Costanzo
tcostanzo@oif.org
Events Manager
Cate Feeser
cfeeser@oif.org
Information & Resource Director
Mary Beth Huber
mhuber@oif.org
Information & Resource Specialist
Marie Maffey
mmaffey@oif.org
Database Manager
Desiree Swain
dswain@oif.org
Director of Development
Julianne Weiner
jweiner@oif.org
General Correspondance/Information:
Osteogenesis Imperfecta Foundation
804 W. Diamond Ave., Suite 210
Gaithersburg, MD 20878
(800) 981-2663 Fax: (301) 947-0456
www.oif.org / bonelink@oif.org
Donations/Contributions:
Osteogenesis Imperfecta Foundation
P.O. Box 630342
Baltimore, MD 21263-0342
Snapshot
7,000
6,000
5,000
4,000
3,000
2,000
1,000
Breakthrough & E-Newsletter
Subscribers
0
6/02 12/02 6/03 12/03
Breakthrough
Subscribers
E-Newsletter
Subscribers
From the Comm. Dir.
The Snapshot above clearly shows that the number of people we’re reaching is
steadily increasing. Through our website and newsletter, more than 9,500 people are
regularly updated about the Foundation’s programs and information resources. The
wesbite has an average of 30,000 visits each month, and the Foundation ships almost
10,000 information packets out to the community each year. When you add the 10,000
nurses we reached through the recent medical outreach program with the Nurses Guide,
the million people who saw the OI logo on milk cartons in the New England area, and the
millions more who will see our public service announcements in the coming months, we
have a lot to be proud of.
But the Snapshot tells another story, as well. Our best estimates place the number
of people in the U.S. who have OI at 30,000 to 50,000 people (see the article on page 7).
That means there are as many as 40,000 people with OI who aren’t up-to-date on the
Foundation’s activities.
We take that very seriously. The OI Foundation is doing everything possible to
ensure everyone affected by OI in the United States knows what a relationship with the
Foundation might offer them– support, information resources, up-to-date research
information, and friendships with people who understand what it’s like to live with OI.
But just as importantly, there are hundreds of thousands of people without OI in
the U.S. who might benefit by “finding” the OI Foundation: doctors, ER & EMT
personnel, nurses, social workers and school teachers are just a few that readily come to
mind. These are people you are in contact with... and getting them involved takes one
simple question: “Have you checked out the OI Foundation’s resources on that?”
Imagine how strong our community would be– and what we might accomplish–
with 50,000 people actively involved, or 100,000, or 200,000.
It’s possible, if we’re all reaching out. No one dared dream two years ago that we
would triple the number of visitors to our website, but we did it, just the same. With your
help, we can draw even more people into our communtiy.
No one living with OI should have to do so without support, and everyone
impacted by OI– no matter how remotely– can benefit from a relationship with the OI
Foundation. Can we triple our numbers again by this time next year? Perhaps.
It’s certainly worth the effort.
Breakthrough Winter 2004 Page 2