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.

OI Resources
Child Abuse Issues


The Osteogenesis Imperfecta Foundation

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.

Boys Town

A good source of information about OI and hearing loss, courtesy of Boys Town and the National Institute on Deafness and Other Communication Disorders.

National Organization of Rare Diseases

Features an extensive data base with articles about rare diseases.

Shriners Hospitals for Crippled Children

Shriners Hospitals deliver pediatric orthopaedic care to patients between birth and eighteen years of age at no charge.

OI Resources:

What is OI?

An informative overview about OI edited by Frederick Matsen III MD Chairman, Department of Orthopaedics, University of Washington, Seattle, USA

The Hearing Loss Resources Home Page

Sponsored by the "SayWhatClub", this organization offers many links to hearing loss sites on the internet.

Dwarfism Home Page

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.


OI Mailing List

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.



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.





Andrew Berry

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 Kelahan

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!

Mark Gash

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.

David Good

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.

Jojo Sturm

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 Lathrop

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.


Bisphosphonate Research Program

Alendronate Trials

Bone Marrow Transplant Experiment

Other OI Research


Med-Sell Classified Ads

A great resource for all kinds of new and used wheelchairs and other assisting devices.

Donated and Used Equipment

A bulletin board for donated and used wheel chairs, walkers, crutches, etc. You may request equipment here, also.


Clinical Cases

A clinical case presentation by Drs. Masafumi Homma and Richard W. Kruse regarding OI and ambulatory ability. Includes high-quality x-rays.

Basilar Impression Surgery: One Family's Story

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.

Adaptive Computing Technology Home Page

This organization is involved in adaptive technology which allows computer access to persons with disabilities.

SBA Handicapped Assistance Loan Program

Information about the Small Business Administration's financing program for disabled individuals who wish to start, acquire or operate a small business.

A Report on the 1995 Australian OI Conference

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.

Barbara Smith

Shari DeLuca

Carone Sturm

For more info, you can contact me at carone@numigroup.com