October 2002: Visitors: please note...this site is ANCIENT! I'll update links one of these days.
Go here for information about Pamidronate, an effective therapy for kids with OI.
Welcome to my OI Home Page!
My name is Carone Sturm, I live in Fairbanks Alaska, and my son, Jojo, has osteogenesis imperfecta.
The following sites are some that I have found
while surfing for information about OI, or "brittle bone disease."
This web page is not affiliated with any official organization; it's simply
a collection of information you may find of interest.
You'll find my son's story under "Jojo Sturm"
below.
Please let me know if you'd like to include information about yourself here...sharing
information is what it's all about! Send me an e-mail at sturm@polarnet.com.
Organizations
OI Resources
Listserver
Newsgroups
People
Research
Equipment
Miscellaneous
Child Abuse Issues
Organizations
The most active OI organization in the United States, the OIF's
goal is to improve the quality of life for individuals affected by OI through
research, education, awareness and mutual support. Lots of good information
here!
European Osteogenesis
Imperfecta Organizations
Hop the globe and visit the European Osteogenesis Imperfecta Foundation. Countries included here are Norway, Germany, France and Italy.
A good source of information about OI and hearing loss, courtesy
of Boys Town and the National Institute on Deafness and Other Communication
Disorders.
Features an extensive data base with articles about rare diseases.
Shriners Hospitals deliver pediatric orthopaedic care to patients
between birth and eighteen years of age at no charge.
OI Resources:
An informative overview about OI edited by Frederick Matsen
III MD Chairman, Department of Orthopaedics, University of Washington, Seattle,
USA
Sponsored by the "SayWhatClub", this organization
offers many links to hearing loss sites on the internet.
Lots of good resources for those affected by dwarfism, and their
families.
An article by Michael L. Richardson, M.D. about the spine curvature
that often accompanies OI.
Listserver:
Andrew Berry keeps us all in touch with the mailing list he's
put together for those affected with OI. Simply subscribe to the list and
you'll meet lots of other folks with similar interests and concerns.
Newsgroups:
Another wonderful way to meet fellow "OIers"! This
is administered by Dave in Fresno, California, who started the newsgroup
last summer. He said it's sometimes rather quitet, but can really pick up.
If you are unable to reach it when you select this link, ask your internet
service provider to add it to their collection of newsgroups.
People:
Andy's late son, Max, had severe OI, and Andy, who lives in
Australia, is actively involved in sharing information about OI on the internet.
Andy manages the OI Listserv (above) and has contributed several articles
to this site. He is preparing to launch a new OI web site, so stay tuned!
Erin is nine years old and lives in Fairbanks, Alaska. She
has Type IV OI, which, according to her mom, hasn't slowed her down a bit!
Wow--what a site! Mark is a wildly talented artist, as you'll see when you visit his home page. He shares his art, information about OI, and other interesting stuff.
Such a Link Meister! This guy's got tons of great sites on his
page...a few are duplicated here (I found him after much of my searching.
Oh, well.) Good OI and disability links.
The youngest kid on the page (so far!), JoJo is from Fairbanks,
Alaska. His mom (that's me) shares info about OI experiences and therapies related to his Type I OI.
Doug lives in Los Angeles, and has lots of disability resources
on his page, as well as some fun links. Check out the web site known as
Stately Paper Cut Manor.
Research:
Equipment
A great resource for all kinds of new and used wheelchairs and
other assisting devices.
A bulletin board for donated and used wheel chairs, walkers,
crutches, etc. You may request equipment here, also.
Miscellaneous:
A clinical case presentation by Drs. Masafumi Homma and Richard
W. Kruse regarding OI and ambulatory ability. Includes high-quality x-rays.
Andrew Berry contributes an article about an Australian woman
who traveled to England for basilar impression surgery, a condition which
may cause headaches, nausea and loss of balance due to a build up of fluid
on the brain.
This organization is involved in adaptive technology which allows
computer access to persons with disabilities.
Information about the Small Business Administration's financing
program for disabled individuals who wish to start, acquire or operate a
small business.
Andrew Berry and Susan Kerridge report the news from last year's
OI conference in Victoria.
Child Abuse Issues
As many affected with OI know, wrongful charges of child abuse
are not uncommon. This forum is for families to tell their stories and to
share their experiences with others who truly understand.