Breakthrough - Osteogenesis Imperfecta Foundation

B reakthrough 

The Newsletter of the Osteogenesis Imperfecta Foundation 

Volume 29, No. 1 Winter 2004 

The ‘UPS Family’ delivers on-going support for OI 

When UPS employee Dan Krudys’ 

son, Jeffrey, was born with OI eight 

years ago, UPS employees began 

pitching in to help everyone with OI. 

Over the course of those eight years, 

thousands of employees, from union 

mechanics to package sorters to 

district managers, have opened their 

hearts and wallets after meeting 

Jeffrey and Dan, who has been with 

UPS for 25 years. The commitment to 

contributing to the OI Foundation has 

continued through transfers to new 

states and new jobs within UPS. 

Since 1996, UPS employees have 

taken a leading role in the struggle to 

improve the lives of people with OI by 

contributing more than $631,000. 

In 2004 alone, employees will donate 

more than $230,000 through payroll 

deductions and stock gifts to the 

annual United Way campaign, and 

Stan Dean, North Jersey District Manager, 

‘drives’ the District’s OI Fundraising efforts. 

through organizing fund raising events 

such as golf, softball and basketball 

tournaments. 

This is more than any other 

corporation’s employees donate, and 

each year UPS contributions represent 

more than 15% of the OI Foundation’s 

annual budget. 

The UPS – OI Foundation campaign 

has spread from coast to coast. 

Highlights of their efforts include: 

Alabama District 

Phil Schmidt and Jon Rich helped 

raise awareness of OI and support for 

the Foundation in the Alabama District 

for the first time in 2003, and raised 

more than $6,000 through the United 

Way Campaign. 

Atlantic District 

In Baltimore, Maryland, Norman 

Aquilino encouraged support of the OI 

Foundation, and his teammates 

Continued on page 5 

Metabolic Research Center celebrates 

20 years of making a difference 

Reprinted from Between Us, 

The Newsletter of the 

Shriners Hospitals for Children 

• Collaborative discovery of the genetic 

cause for 10 heritable bone diseases. 

• 140 research articles and chapters 

published. 

• Internationally recognized expertise 

with world-wide referrals. 

All of these are impressive facts about 

the St. Louis Hospital’s Center for Metabolic 

Bone Disease and Molecular Research, 

which celebrates its 20th anniversary 

this year. But facts and statistics 

are not what impress the family of 

Alex Hunter, a 13-year old patient of the 

research center who has OI. 

“The amount of knowlege at the research 

center is what impresses us,” said 

Joanne Hunter, Alex’s mom. “No one 

had been able to answer any questions 

for us after Alex was diagnosed; that is, 

until we met Dr. Whyte.” 

Michael P. Whyte, M.D., medical-scientific 

director and founder of the center 

in 1983, and a current OI Foundation 

Medial Advisory Council Member and 

former chairman, is known world-wide 

for his expertise in the diagnosis, treatment 

and research of more than a hundred 

rare bone disorders, including OI. 

His work and collaboration with physi- 


What’s Inside 

President’s Message .................. 3 

Fundraising Briefs .................... 4,5 

Q&A: Respiratory Concerns ....... 6 

Estimating # of People with OI .... 7 

Improvements to Chats .............. 8 

News Notes .................................. 9 

Conference Topics ....................10 

Conference Registration ..... Insert 

Travel Tips ............................12, 14 

Volunteers Needed ....................15 

Spotlight: Kathleen Kowis .........16 

Memorials & Honorariums .......17 

Cornerstones .............................18 

Understanding Research ..........19

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

Dear Friends, 

President’s Message 

Jamie Kendall 

Thank you. 

I am so impressed and pleased with your continued overwhelming support of the 

OI Foundation and our community. Your willingness to get involved is incredible, and 

it’s clearly evident in the pages of this newsletter and the continued expansion of the 

Foundation’s research, information and support programs. 

We’ve received hundreds of responses to our 2004-2007 Strategic Plan Survey, 

and are in the process of compiling all that data into a concise report that will help 

shape and guide our efforts through the next few years. The fact that so many of you took the 

time to share your opinion with us is inspiring. I’m confident that the Board of Directors will have 

a clear picture of your needs and priorities as we enter the next stage of the strategic planning 

process. 

Our mailbox has also been filled with Board Nominations. I don’t envy the nominating 

committee as they wade through your suggestions and offers to serve, and try to present a 

balanced slate of candidates to the board. The credentials are impressive, and the willingness to 

serve is humbling. 

You’ll find this issue filled with stories and articles about the 2004 Conference, along with 

the 2004 registration form. Even if you’re not planning to attend the conference, I encourage you 

to take the the time to read the entire newsletter; the articles and briefs on transportation and 

travel will certainly come in handy at some point, and you’ll learn much about the Foundation, 

the conference planning process and our community by reading the rest. To be quite honest, I 

hope the articles inspire you to attend the conference. Whether it’s your first or fifteenth time 

attending, I assure you it will be well worth your while. 

We’re growing and expanding at a dizzying pace, extending our outreach and improving our 

programs, while (as always) responding to your requests and priorities. None of this would be 

possible without your input, support, contributions and efforts. 

I am thankful every day that I have this opportunity to serve such a wonderful community, 

during such an exciting time in its history. 

Take Care & Enjoy! 

Jamie D. Kendall 

President, OI Foundation Board of Directors 

Page 3 Breakthrough Winter 2004

Fundraising Briefs 

Hustle of UPS’ business doesn’t slow support of OI 

by Heller An Shapiro 

OI Fdn. Executive Director 

Photo Courtesy of UPS 

Foundation streamlines process with new lock-box 

You’ll soon be seeing a new post office box address on 

many of the OI Foundation’s materials. 

In order to streamline our 

check-processing system, all donations, 

renewals and orders accompanied 

by a check or money 

order will be sent directly to a 

post office box at our bank, 

rather than the national office. 

“We’ll save hundreds of manhours 

each month by having the 

bank prepare the deposits and process the checks,” according 

to Tom Costanzo, the Foundation’s Director of Finance 

and Administration. 

The new process will not slow the handling of orders for 

resources, or delay correspondence. All materials that arrive 

The belts are always moving at UPS sorting facilities 

throughout the country. 

The UPS offices are 

dramatically different from a 

standard office. Inside huge 

warehouses, all activity centers 

around giant conveyer belts 

filled with packages. Small, 

linked trailer trucks move 

unusual packages, such as tires, 

shovels or brooms. At regular 

intervals, brown UPS delivery 

trucks squeeze into slots 

alongside the belts, so close 

together you can’t even walk 

between them. The 24-hour roar of 

trucks, belts and movement is extraordinary. 

Rising from the cement floor 

are small, portable offices where the 

management staff sporadically are 

able to sit down to work. 

It’s here that OI Foundation staff 

have an opportunity to tell the OI story. 

In conference rooms and break rooms, 

surrounded by trucks, almost drowned 

out by the roar of machinery, we talk 

about life with OI, and UPS employees 

listen. The hardened faces of union 

mechanics, the young faces of parttime 

package sorters, and the faces of 

seasoned managers all fill with empathy 

when they learn about what living 

with OI means to 8-year old Jeffrey 

Krudys, whose father, Dan, has been 

with UPS for 25 years. 

Since 1996, more than 450 UPS 

employees have taken a leading role in 

the struggle to improve the lives of 

people with OI by contributing more 

than $631,000 through payroll deductions 

and stock gifts to the annual 

United Way campaign, and through 

organizing fund raising events such as 

golf, softball and basketball tournaments. 

And the commitment to contributing 

to the OI Foundation continues 

through transfers to new states and 

at the lock box are forwarded to the OI Foundation offices 

the next business day. Thank you letters and tax receipts will 

also not be affected by the 

Mail donations, renewals & orders to: 

change. The Foundation 

has simply eliminated the 

more time-consuming steps 

in processing gifts or resource 

orders. 

Correspondence to 

staff members should still 

be sent to the Foundation’s 

office address. When in doubt, community members should 

use the Gaithersburg address and staff members will route 

the mail as appropriate. 

The new address will be printed on envelopes and other 

materials as they are reprinted. 

The OI Foundation 

P.O. Box 630342 

Baltimore, MD 21263-0342 

new jobs within UPS. Many 

employees have been giving 

annually, ever since Jeffrey was 

born, and the only thanks they 

want is to see Jeffrey grow and 

achieve. 

UPS employees contributed 

more than 15% of the 

Foundation’s total annual budget 

in fiscal year 2003. This is more 

than any other corporation’s 

employees donate. The UPS - 

OI Foundation partnership 

provides free information and 

support services, and is a vital 

component of the OI research program 

which seeks treatments and a 

cure. 

In the middle of all the activity– 

hustling, whirring conveyor belts, 

roaring trucks, and automated machinery 

moving anonymous boxes, packages 

and “next day” envelopes– it 

would be easy to forget about one 

small voice and simply focus on the job 

at hand. Yet UPS employees consistently 

manage to find the time to give 

so generously to support Jeffrey and 

the rest of the OI community, giving 

the phrase “UPS Delivers” a special 

meaning to everyone with OI. 


UPS Delivers Continued from page 1 

responded by raising 

nearly $11,200. 

Northern California 

District 

In Northern California, 

Nick Kochek has been 

talking to his coworkers 

about Jeffrey Krudys and 

the OI Foundation. Dan 

and Jeffrey made a short 

video explaining what OI 

is for each of the UPS 

districts that participated 

in these efforts, and Nick 

feels that showing the tape 

helped. 

“That was really the home run,” Nick 

said. “That was real life.” 

To date, the Northern California 

District UPS employees have designated 

$18,900 to the OI Foundation. 

Make a difference... 

Fundraising Briefs 

Dan and Jeff Krudys meet with Kansas District Manager Glenn Rice... 

fittingly under a poster that says “leaders.” Dan and Jeff inspired a 

fundraising effort eight years ago that now contributes 15% of the 

Foundation’s annual budget. 

Southern California District 

Major Warner and the UPS employees in Southern California 

have committed to support the OI Foundation, and are 

currently generating interest and involvement . 

Southern Illinois District 

Don Gately and the UPS employees in Southern Illinois 

took Dan’s message and Jeffrey’s needs to heart, and together 

have also raised generous contributions. 

Metro Jersey District 

Bill Schike and the people he works with have joined in 

the fight against OI, and have had a huge impact. With 

Bill’s encouragement, more than $20,000 was raised through 

the United Way Campaign to ensure that kids like Jeffrey get 

the answers they need. 

“It makes you feel good to donate to a worthy cause,” Bill 

said. “It makes you feel 

even better when that 

worthy cause has a 

direct impact on the 

UPS family,” he added. 

Emil Soltis reached 

out to his co-workers 

and asked them to 

support the OI Foundation 

and make a 

difference in the lives of 

people with OI. His 

coworkers at UPS 

answered emphatically, 

and contributed 

$15,000. 

“When you meet 

Jeffrey, that’s all it 

takes,” Emil said. “His positive outlook on life inspired me 

and my partners to get involved and make a difference.” 

North Jersey District 

In North Jersey, the place where Dan started work with 

UPS and the place where these efforts began, Mike Battaglia 

organizes an Annual Golf Invitational to benefit the OI 

Foundation. 

Through that event and the United Way Campaign, the 

North Jersey District raises more than $70,000 each year. 

Special thanks go to Stan Deans, North Jersey District 

Manager, whose outstanding support and leadership 

helped drive the success of both the golf tournament and the 

United Way Campaign on behalf of the OI Foundation. 

Kansas District 

In Kansas, where Jeffrey and his family now live, the 

outpouring of support and donations was astounding. 

Thanks to the leadership of Glenn Rice and the Kansas 

District staff, supporters in Jeffrey’s new home came together, 

raising $92,500 for the OI Foundation through the 

United Way Campaign administered by Cindy Pugh and 

Celeste Gruhin. 

The OI Foundation relies on the volunteer and fundraising efforts of the OI Community to 

make our support and information resource programs available to everyone affected by OI. 

Your contribution, no matter how large or small, is vital to our ongoing success. To learn 

how you can help through a financial contribution, visit the “Donate Now” page on www.oif.org. 

If you’d prefer to donate time by volunteering to support an event or one of the Foundation’s 

many support programs, click on the “Volunteer” button on www.oif.org, call us at (800) 981- 

2663, or write to bonelink@oif.org. 


Q& 

A 

Respiratory 

Concerns 

Answers to Members’ Questions 

Respiratory Concerns 

for Children & Adults 

This article is based on information from the fact sheet, OI Issues: 

Maintaining Health During the Adult Years, and book, Osteogenesis 

Imperfecta: A Guide for Nurses, both published by the OI Foundation. 

What is the repiratory system? 

The respiratory system’s job is to bring oxygen into the 

body and remove carbon dioxide, the waste product of 

breathing, from the body. The respiratory system is made up 

of two parts: the upper respiratory tract includes the nose, 

ears, sinuses, mouth and the structures found in the throat, 

and the lower respiratory tract includes the trachea, bronchial 

tubes and the lungs. The ribs and diaphragm assist the 

lungs as they expand and contract with each breath. In the 

lungs, impurities from the air are filtered out and the oxygen 

is transferred to the blood system. Oxygen is the fuel that 

all cells and all organs in the human body need to function. 

Getting enough oxygen is important for good health. 

What are the common causes of upper respiratory 

problems? 

• Viral infections such as colds and flu. 

• Bacterial infections such as bronchitis and pneumonia. 

• Allergies. 

Who should be concerned about respiratory 

function? 

Respiratory health is a concern for children and adults 

with OI who: 

• Are short in stature. 

• Have scoliosis, kyphosis or both (kyphoscoliosis). 

• Have chest or rib cage deformities such as pectus 

carinatum or pectus excavatum. 

• Lead a sedentary life style. 

As a rule, the more severe the OI, the more susceptible 

the person will be to lung or breathing problems. 

Why does OI affect respiration? 

Deformities of the spine and ribs can limit the space 

available for the lungs to expand. This decreases the 

amount of air in the lungs, which means that less oxygen is 

available to the body and that the lungs cannot get rid of all 

of the carbon dioxide. Pulmonary (lung) complications can 

occur due to rib fractures, muscle weakness of the chest 

wall, heart valve disorders, chronic bronchitis and asthma. 

What problems will this cause? 

Breathing problems can lead to shortness of breath, 

tiredness, insomnia, migraine headaches, sleep apnea, and 

can make the person more susceptible to infections such as 

pneumonia. Restrictive pulmonary disorder, a reduction of 

lung capacity, is common in people with severe OI or any 

one who has decreased chest volume, chronic bronchitis or 

asthma. Respiratory complications leading to pneumonia or 

heart failure represent a significant cause of death for 

people with Type II or Type III OI. 

What can be done to prevent a serious 

respiratory problem? 

There are four things that every person with OI can do to 

protect themselves from serious respiratory problems. 

1. Treat all respiratory infections, even colds and 

coughs, immediately. 

2. Seek prompt treatment for any difficulty breathing. 

3. Have your respiratory function tested. Adults 

with Type III or Type IV OI, or spine curvature, 

should see a pulmonologist every 1-2 years. 

4. Exercise to promote deep breathing. Talk with 

your doctor about how to do this safely. 

What else can be done? 

• Children and adults should have any spine curvature 

monitored. In some cases surgery may be necessary. 

• Discuss with your doctor how you can exercise safely 

to develop muscle strength and lung capacity. 

• Talk with your doctor about whether you are a candidate 

for the flu shot or pneumonia vaccine. 

• Do not smoke, and avoid exposure to second-hand 

smoke. 

• Use of supplemental oxygen and use of BiPAP, a 

positive pressure breathing device, can help manage 

pulmonary function. 

• Asthma inhalers during the day are sometimes beneficial. 

People with chronic asthma may need additional 

medications. 


Article 

How do we estimate the number of people with OI? 

Available statistics regarding the 

number of people with OI are estimates, 

not exact figures. It is estimated 

that 30,000 to 50,000 people in 

the United States have OI. This 

estimate is an “educated guess” based 

in part on studies done in other countries, 

where smaller populations and 

the existence of centralized OI registries 

make it more feasible for researchers 

to count the number of 

people affected. OI Type I is by far 

the most common form of OI; researchers 

estimate that 50 to 60 

percent of people with OI have this 

form of the disorder. 

Scientists who study diseases in 

populations use “incidence” and 

“prevalence” to measure how often a 

disease or disorder occurs. Incidence 

means the number of new cases of a 

disease or disorder in the population 

during a given period. For genetic 

disorders such as OI, incidence usually 

refers to the number of babies born 

each year with the disorder. 

Prevalence refers to the number of 

people of all ages who have a disease 

or disorder at a designated time. When 

people ask, “How many people in the 

U.S. have OI?” they are asking about 

the prevalence of OI, not the incidence. 

A more precise estimate of OI 

incidence or prevalence in the U.S. 

would require a comprehensive 

population study. Such a study would 

have to inquire about the number of 

cases of OI occurring in a large group 

of people who are representative of 

the wider population in terms of 

gender, race, ethnicity, geography, etc. 

This type of study has not been done in 

the United States due to health privacy 

issues and the immense cost. 

Alternatively, a study could attempt 

to locate—to actually count—every 

person in the country who has been 

diagnosed with OI. This type of 

study’s utility as a precise counting tool 

is limited. How does one reach everyone? 

Researchers could try to locate 

people with OI by contacting doctors, 

hospitals, and clinics where people 

might go for treatment, but health 

privacy laws would limit the 

physician’s response. It would also be 

extremely difficult to reach people with 

OI who are unaffiliated with any OIrelated 

organization or treatment 

facility, including those with very mild 

OI who remain undiagnosed their 

entire lifetime. 

Gathering data on the incidence or 

prevalence of OI is difficult because of 

the variable nature of OI. Though 

more severe cases of OI are usually 

apparent at (or before) birth, many 

people with OI are not diagnosed until 

later in life. When babies are stillborn 

as a result of the most severe type of 

OI, it may not be recorded as the 

official cause of death. Therefore, 

even if a comprehensive effort was 

made to determine how many babies 

are born with OI, many cases of OI 

would still be missed. Likewise, it is 

not uncommon for an adult with mild 

OI to be unaware of having the 

disorder. Even the most rigorous and 

far-reaching study might miss a 

significant number of people with OI. 

To try to estimate prevalence, based 

on incidence, a study would have to be 

MAKE new friends in the OI Community... 

created that would ensure the measurement 

of incidence was complete. 

You would then need to know the 

life expectancy of those born with the 

disorder, which varies greatly due to 

the variability of the disorder. It’s 

simply not possible to accurately 

measure the prevalence of OI in the 

U.S. 

Therefore we continue to use the 

30,000 to 50,000 number, which is 

based on the most accurate incidence 

and prevalence figures from smaller 

countries with socialized medicine and 

current OI registries. That data is 

compared to U.S. population figures 

and the limited hard data we do have 

available about OI in the U.S. to 

extrapolate our current estimate. 

OI is often considered a rare disorder. 

The National Organization for 

Rare Disorders defines a rare disorder 

as one that affects fewer that 200,000 

people in the United States. 

While OI certainly qualifies under 

their definition, it helps to put the 

estimated number into perspective by 

comparing it to recent estimates from 

other disorders. It is estimated that: 

· 200,000 to 250,000 people in the 

U.S. have multiple sclerosis, a progressive 

neurological disorder (source: 

National Multiple Sclerosis Society), 

· 40,000 people in the U.S. have 

Marfan Syndrome, a connective tissue 

disorder affecting the heart and other 

organs (source: National Marfan 

Foundation), and 

· Cystic Fibrosis affects approximately 

30,000 children and young adults in the 

U.S. (Source: Cystic Fibrosis Foundation). 

...by joining us each Sunday at 8 p.m. EST on www.oif.org for the OI Foundation’s online chats. 

MEET new friends at the National Conference 

June 24-26,2004, in Dallas, TX! 


Article 

For more details, go to www.oif.org 

Improvements to the “online communities” coming in 2004 

The OI Foundation, with the 

help of five dedicated volunteers, is 

planning significant changes to the 

online communities in the next few 

months. 

The changes are designed to 

add more structure to the program 

and to make the chats more informative 

and entertaining to the guests. 

“The chats are such an incredible 

resource for the OI community,” 

according to volunteer chat coordinator 

Susie Wilson, “and the more 

community involvement we get, the 

better the resource becomes!” 

Clicking on the “Chat” button on 

the OI Foundation’s website will 

bring you to the online community 

functions, including the chat, message 

boards, and instant messaging 

functions. 

Topics and guests 

The most significant change will be the addition of topics 

and guests once a month in the chat room. 

The chat room currently hosts between fifteen and 

twenty people each Sunday night at 8 p.m. for the “Open 

Chat” sessions. Often, chat newcomers have just learned 

of a positive OI diagnosis, and are in search of support, 

solace, and information. 

“It’s so wonderful to see a new parent come into the 

room scared and confused, and leave with a much greater 

understanding of OI and the way it affects people’s lives,” 

Susie said. 

While welcoming new parents and directing them to 

appropriate OI Foundation resources is one of the primary 

responsibilities of chat hosts, new parents are by no means 

the only people in the chat rooms. 

Each week the rooms draw a fairly consistent and even 

mix of young adults, single adults and parents— with and 

without OI— and a sprinkling of teens. The combination 

creates lively discussions, with chatters sharing basic living 

tips, discussing the pros and cons of sheltering children 

with OI to prevent fractures, and even offering personal 

experiences to illustrate the joys and frustrations of living 

with the disorder. 

When the conversation turns personal, or when someone 

has a specific question or concern they don’t wish to 

discuss in the open forum, private chat conversations are 

possible. 

The monthly chat topic may include guest speakers (if 

appropriate), and will be posted on the website and 

advertised through the e-mail newsletters. The “Open 

Chat” room will also be open for general chatter, and the 

chat hosts will be available to assist newcomers with 

questions about OI. 

Teen Chats are moving to Sunday 

The other significant change to come in the next month is 

the transition of the teen chat room to Sunday evenings at 

8 p.m. from the current schedule of every other Thursday 

at 7. 

The teens will still have their own chat room to use if 

they wish to chat with one another “without adults watching,” 

but they will be encouraged to participate in the topic 

chats and Open Chats. 

“Often their insight is amazing,” Susie said, “and everyone 

in the chat room benefits from their enthusiasm and 

outlook on life, especially newcomers and parents with 

young children with OI.” 

Other changes are administrative in nature, but should 

improve the quality and consistency of the information 

shared in the chatrooms. The changes will also make it 

easier for the OI Foundation to follow up with individual 

chatters’ specific questions and ensure they have the most 

up-to-date, accurate information. 

The OI Foundation’s chat rooms are officially hosted 

each Sunday evening from 8 to 10 p.m., EST, except 

for some holiday weekends as posted on the 

website calendar and chat entry page. 

Chatters are required to have a logon ID and password 

on www.oif.org before entering the chat 

rooms, for privacy and security reasons. First time 

chatters will also have to acknowlege the Chat Policies 

before they can log in. 

For more information, check the chat page on 

www.oif.org or write to webmaster@oif.org. 


For more details, go to www.oif.org 

OI Foundation co-sponsors scientific meeting 

The OI Foundation has agreed to be a co-sponsor, with the 

American Society for Bone and Mineral Research, of the 

upcoming Advances in Skeletal Anabolic Agents for the 

Treatment of Osteoporosis Scientific Meeting. 

The two-day meeting will review the current status of the 

field and explore future directions for clinical and basic research 

into anabolic agents for metabolic bone diseases. Advances 

in the understanding of bone formation and the identification 

of signaling molecules may have a significant impact 

in the understanding and treating of metabolic bone disorders, 

including osteogenesis imperfecta. 

Playwright’s scholarship program 

The Very Special Arts Playwright Discovery Awards Program 

challenges middle and high school students of all abilities 

to take a closer look at the world around them, examine 

how disability affects their lives and the lives of others, and 

express their views through the art of playwriting. Two scripts 

are selected by a distinguished panel of award-winning theater 

artists for professional production at The John F. Kennedy 

Center for the Performing Arts. Award recipients receive 

scholarship awards and a trip to Washington, D.C. to view 

the production. Submission deadline is April 15. For details, 

visit www.vsarts.org/programs. 

Conference and hotel registration deadlines 

Those attending the 2004 National OI Conference are encouraged 

to register as early as possible. Early Bird registration 

discounts are available through March 12, 2004. 

The Foundation has reserved a block of rooms at the Adam’s 

Mark Hotel at a reduced rate of $109.00 per night, singlequad 

occupancy, from June 22 through June 27. Hotel reservations 

must be made before June 3, 2004 to qualify for 

the reduced rates, and you must mention the OI Foundation 

when making the reservation. Call the Adam’s Mark National 

Reservation line at 1-800-444-2326. 

Items to accomodate special needs (shower chairs, refrigerators 

for medicine storage, cribs, roll-away beds, etc.) are 

avaialable on a first come, first served basis, and must be 

requested seperately through the Dallas Adam’s Mark. After 

making your reservations, call (214) 922-8000 to request 

any additional accomodation items for your room. 

Conference Sholarships may be available in ‘04 

The OI Foundation may obtain grant funding for a limited 

number of scholarships to the 2004 National Conference. 

Application information will be available on www.oif.org or 

by calling (800) 981-2663 as soon as the grant is confirmed. 

Refunds will be issued to any scholarship winners who have 

already registered. 

News Notes 

Sweepstakes Update 

More than $19,000 has been raised so far in the 

third annual “Going Places” sweepstakes, with almost 

a month remaining before the final deadline for 

entries. Thank you to all of you who have participated 

in this vital fundraising project. 

The Early Bird drawing for $250 was conducted 

Feb. 6, 2004, and was won by Paula & Gene Seay, 

OI community members. Their winning ticket will be 

placed back into the box for a chance to win a Grand 

Prize of a 7-day, 6-night vacation anywhere in the 

continental U.S., and second and third chance prizes 

of $250 and $100. 

Those final three drawings will be held on or about 

February 27, 2004. 

If you haven’t already done so, mail your ticket 

stubs to the Foundation today to be ensure you and 

those you’ve distributed tickets to are included in the 

grand prize drawings! 

For more information, or to enter online (at suggested 

donation amounts, through midnight, Feb. 24) 

visit the sweepstakes page on www.oif.org. 

New video on improving accessibility in offices, 

homes and businesses now available 

The Minneapolis Advisory Committee on People with Disabilities 

has created a video “Access Maze” to demonstrate 

the challenges— and solutions— for creating user-friendly 

accessible offices, homes and other living, working and business 

spaces. The video project was funded entirely through 

project contributions from the American Institute of Architects 

and seven local architectural firms. Ordering information 

can be found at http://www.accessmaze.org. 

Service Dogs to be first “chat topic” in 2004 

The first in a series of scheduled chats focused on a single 

topic will be held at 8 p.m. (EST) March 28, 2004. The topic 

will be “service dogs,” and will include members of the OI 

community who own service dogs and have recently been 

through the training program. 

Staff members from two of the larger service dog providers 

have been invited to join the chat to answer your questions 

about the application process and eligibility for obtaining 

a service dog. 

To join the chat, simply log on to www.oif.org and click on 

the “Chat” button in the left margin. The regular weekly “Open 

Chat” will be open in a separate room. For more information, 

write to bbradner@oif.org or webmaster@oif.org. 


2004 Conference Information 

Conference program is packed with information 

The OI Foundation is pleased to be 

able to provide you with the following 

working list of topics for the 2004 biennial 

conference. A complete conference 

schedule, including speakers and session 

times, will be posted on www.oif.org as 

soon as it is confirmed. 

Wednesday P.M., June 23 

Registration Opens 

Welcome Reception 

Thursday A.M., June 24 

Wellness Fair 

Free Hearing Screenings 

Service Dog Demonstrations 

First Aid Demonstrations 

Adaptive Equipment Demonstrations 

OI: The Basics 

OI Research Update 

Thursday P.M., June 24 

President’s Reception 

Internet Users’ Coffee 

Peer Support Meetings 

Friday & Saturday, June 25-26 

Medical Topics 

First Aid for Families 

Women’s Health: Pregnancy 

Women’s Health: GYN & Menopause 

Respiratory Issues 

Pain Management, Infants & Children 

Pain Management, Adults 

Hearing Issues, Children 

Hearing Issues, Adults 

Neurology, Children 

Meurology, Adults 

$350 

value for 

Mental Health 

Adult Concerns 

Joint Replacement Surgery 

Dental Issues, Adults 

Dental Issues, Children 

Orthopedic Management 

Rodding 

Spinal Issues 

Exercise 

Medications 

Managing Type I OI in Children 

Managing Type I OI in Adults 

Infant and Child Care 

Research Update 

Genetics: Testing & Diagnosis 

Post Surgical Care of Children 

OI and Osteoporosis 

Ask the Doctors 

Non-Medical Topics 

Driving 

Dating 

Sexuality & Relationships 

Independent Living 

Home Adaptation 

Clothing, Fashionable Solutions 

Disability Benefits 

SSI 

Employment, Maintaining Benefits 

Siblings 

Child Rearing 

School Issues 

The Doctor/Patient Relationship 

Adaptive Equipment 

Mobility Devices 

Finances 

Adoption 

Travel 

Keeping Good Medical Records 

Conference Fees are already set at 

less than half the cost to the OI Foundation... 

Peer-to-Peer Support Meetings 

Parents Who Have OI 

Type I 

Age 40 & Up 

Teens 

Spouses of People with OI 

Grandparents 

Fathers 

Home Schoolers 

Parents of Pre-school 

Parents of School-aged 

Parents of Teens 

Young Adults 

Faith Groups 

Internet Users 

Foundation-Related Topics 

Fund Raising Round Table 

Support Group Leader Training 

How to Start a New Support Group 

Teen Room Topics 

Adaptive Sports 

Driving 

Dating & Friends 

Fashion 

Makeup 

Preparing for College 

Careers 

“Meet the Experts” Q&A Sessions 

KeyPals Social 

Saturday, June 26 

Closing Session 

Awards Dinner & Talent Show 

The topics presented in this list are subject 

to change, based on availability of speakers 

and scheduling conflicts. 

$140! Save an additional $30 per attendee! 

The OI Foundation’s actual cost per person attending the National Conference is more than $350. 

Through gifts, grants and fundraising efforts by community members, we’re able to offer a registration 

fee of only $140 for each adult attendee* in 2004. If you register before March 12, 2004, you’ll 

save an additional $30 with the Early Bird Registration Discount. You won’t find a better value 

anywhere... register today! 

* Registration for Children aged 3-17 is $105– only $75 with the Early Bird Discount! Discount does not apply to “Awards Dinner Only” registrants. 



Conference is designed for everyone in the community 

The OI Foundation’s National Conference is designed to 

meet the needs of the entire OI community, including people 

with OI, their families and friends. The information, resources 

and opportunites for support and networking are abundant, 

regardless of age, type or severity. 

While the OI Foundation makes a great effort to ensure 

the conference is accessible to those with mobility issues, 

this is in no way meant to imply the conference is only for 

those with the more severe forms of OI. 

When developing the program, special care is taken to 

ensure that the information 

and support sessions 

cover the entire spectrum 

of living with OI. The OI 

Foundation is always developing 

new resources 

and support information 

for all members of the OI 

Community, and those resources 

are showcased 

at the conference in the Resource Room. The program features 

new speakers and topics each year to meet the needs 

of the OI community, based on input from surveys and trends 

seen in the 7,000 questions and requests for support the OI 

Foundation responds to each year. This year more than 150 

people made suggestions, and the scope of the program has 

grown considerably (see previous page). 

While conference is intended to be an information resource, 

there are a number of social events that take place 

during the weekend. The friendships developed at these 

events, and throughout the course of the conference, are a 

source of support and comfort that lasts a lifetime. 

Meeting with other people or families dealing with OI is a 

wonderful opportunity to discuss living successfully with OI 

with those who have “been there, done that.” It’s an opportunity 

to learn from others’ successes and failures, and to gain 

insight and suggestions for dealing with all aspects of living 

with OI, from childbearing to living independently. 

Conference is also one of the few times people with OI can 

interact directly with the nation’s top researchers and medical 

professionals on a personal 

or professional basis. 

Almost all of the 

speakers at conference 

will be available to respond 

to individual questions 

or concerns in addition 

to the information 

they’ll share at their sessions. 

Attendance by a broad spectrum of people from the OI 

Community is critical to the conference’s success, and to the 

health of the OI Foundation. No matter how well you’re “connected” 

to the OI community, the biennial national conference 

is absolutely the best way to improve your insight, information, 

and support structure. 

If you’re still not sure whether or not you should attend, ask 

someone who’s been to conference recently, or feel free to 

contact the Foundation at (800) 981-2663 or by writing to 

bonelink@oif.org. 

“No matter how you’re connected to the OI 

Community, the biennial national conference is 

absolutely the best way to improve your insight, 

information and support structure.” 

Your namebadge will be your ticket to all events in Dallas 

The OI Foundation will require all registered 

attendees of the 2004 National 

Conference to display their namebadge 

at all times when participating in scheduled 

events. 

The new requirment is in response to 

increased awareness of security and 

safety concerns, and will help the Foundation 

control costs during the course of 

the weekend. 

The name badges in 2004 will have a 

space provided on the back– where it 

can’t be seen– for all attendees to write 

in emergency contact information. This 

will assist Foundation and Hotel staff 

members to locate friends or family in 

the event of a medical emergency. 

Additionally, the Adams Mark Hotel 

reserves the right to restrict access to 

the hotel and convention areas to registered 

guests, for security reasons. Your 

name badge identifies you as an authorized 

guest and will ensure your ability 

to enter the hotel property without delay. 

By requiring the name badge to be displayed 

at all functions, hotel and Foundation 

staff members can also ensure 

that only registered attendees have access 

to the continental breakfasts, break 

beverages, receptions and awards dinner. 

This will prevent other hotel and conference 

center guests from helping 

themselves to breaks and running up the 

Foundation’s catering bills during the 

weekend. 

Name badges will be given to all registered 

guests upon arrival, including children 

and teens. They may be pinned or 

hung from mobility devices or strollers 

or worn, but must be displayed at all 

times. 

For more information, contact the 

Foundation’s Events Manager, Cate 

Feeser, at cfeeser@oif.org or by calling 

(800) 981-2663. 

Information is also be available online 

at www.oif.org. 


Article 

Traveling with wheelchairs, oxygen requires planning 

Traveling today is daunting enough, 

but when you add in the need for a 

power wheelchair or oxygen, it may 

seem even more overwhelming. 

With careful planning, the need for a 

wheelchair or oxygen should not 

prevent you from joining us in Dallas. 

While there’s no substitute for a travel 

agent who’s experienced with assisting 

travelers with disabilities, the following 

questions and answers should help 

relieve some of the apprehension. 

You can search for travel agents 

who specialize in disabled travel 

through the American Society of 

Travel Agents, using their advanced 

search options on www.astanet.com. 

What is the best way to travel 

by air with a wheelchair? 

There have been many horror stories 

about what airlines have done to 

power wheelchairs by the time they 

arrive at their destination. However, 

most— if not all— of those stories 

might have never happened with some 

simple preparation. Here are some tips 

to prevent mishaps: 

• Arrive early and always check the 

chair or scooter at the boarding gate. 

Request that it be delivered to you at 

the destination gate, not at the 

baggage claim area. 

• If possible, use gel- or foam-filled 

batteries in your power wheelchair 

or scooter, and carry the paperwork 

about the batteries with you in case 

the airline has any questions. 

• Standard acid-filled batteries will 

be removed by ground crews and 

packed in special containers for 

transport, so if you must use them, 

be sure to tape instructions on 

removal and installation in plain view 

on the chair or scooter. 

• If you use a fold up chair, request 

that it be stored in the on-board 

closet. There is usually only room for 

one wheelchair, so arrive early to 

make your request. 

• If you need assistance transferring 

to a plane seat, take responsibility 

and tell the staff how to help lift 

and/or move you. You’re always 

safer assuming that they do not 

know what works for you. 

• Before landing, make sure that 

you remind an attendant that you will 

need your chair waiting for you at 

the gate. They can radio ahead to 

make arrangements. 

• Request an aisle seat, near the 

front of the plane, since most aisles 

in coach are too narrow to 

accomodate chairs. (Some are even 

too narrow to safely navigate with 

crutches). Some airlines offer aisle 

chairs, which are narrower and 

provide easier access to restrooms, 

if needed, but you need to call in 

advance and request it be brought on 

board the plane. 

How do I travel with oxygen? 

Air travel with oxygen can be 

accomplished comfortably and safely 

with advance planning. All US airlines 

require you to provide a doctor’s letter, 

and the FAA also requires a 

physician’s statement. 

You cannot bring your own oxygen 

on board and must use airline-supplied 

oxygen. Requirements vary between 

carriers, but they may require advance 

arrangements ranging from 48 hours to 

7 days. 

You should also make arrangements 

with a local company at your destination 

to have oxygen available during 

your stay. Most vendors will deliver 

directly to the airport or hotel; see the 

“Travel Tips” section on the Conference 

page of www.oif.org. 

This article was excerpted from a 

Q&A published in the Jan/Feb 

2000 issue of Breakthrough. 

Rosemarie Kasper contributed to 

the original article. 

Additional Disability Travel Resources 

Emerging Horizons 

P.O. Box 278 

Ripon, CA 95366 

(209) 599-9409 

Accessible travel newsletter. 

Paralyzed Veteran’s Association 

(800) 444-0120 

Call for a free booklet on air travel 

or to subscribe to their air travel 

newsletter. 

Access for Disabled America 

436 14th St., Suite 200 

Oakland, CA 94612 

(510) 419-0523 


metabolic research Center Continued from page 1 

cians and investigators has led to the discovery 

of the genetic causes of ten heritable 

bone disorders— and the relief 

from other painful bone diseases for 

nearly 1,000 children in the past 20 years. 

“The Shrine has created and nurtured 

a facility that I think is unparalleled for 

diagnosing, treating and researching pediatric 

metabolic bone disease,” Whyte 

said. 

Children with these conditions may 

have brittle bones, such as osteogenesis 

imperfecta, which Alex has, or soft 

bones, involving various forms of rickets. 

The research center sees children 

from all over the world with rare, complex 

and genetically-transmitted bone diseases. 

Changing Children’s Lives 

“Children with these types of disorders 

often suffer from bone pain, and find 

their way to the Shrine’s research center 

only after seeing many different physicians 

and specialists,” stated Judy 

Hartman, research center nurse manager 

and editor of the OI Foundation’s 

newest resource, OI: A Guide for 

Nurses. 

Hartman’s work to help educate pediatric 

nurses about metabolic bone diseases 

recently resulted in her election to 

the presidency of the Pediatri Endocrinology 

Nursing Society, an international 

nursing organization dedicated to nurses 

who specialize in children’s metabolic 

diseases. 

“Our patients come here not only for 

diagnosis, but also for medical therapy 

and orthopedic treatment,” Hartman 

said. “The result is that many children 

who have been suffering can now play 

and have fun with their friends. We can 

often give them their childhood back.” 

Hartman heads a dedicated nursing 

staff, an integral part of a team that also 

includes laboratory and nutritional services 

staffs. These team members believe 

that the care of the patients demands 

the highest level of expertise and 

proficiency, as well as the development 

of close relationships with the children 

and the families. 

“I think the people at the research center 

are wonderful,” Hunter said. “They 

helped us find the support groups and 

information we needed. It was a great 

relief because then we knew we could 

call any time for advice, or just if we 

needed a sounding board.” 

Continued... 

Scientific Breakthroughs 

Many of the research center’s collaborative 

studies have resulted in breakthroughs 

in understanding the genetic 

causes of bone diseases. One of the most 

recent is last year’s discovery of the 

genetic cause of juvenile Paget’s disease 

(JPD), a rare condition of accelerated 

bone formation and breakdown. 

Whyte and his team used information 

from the Human Genome Project to unravel 

the mystery that has been reported 

in only about 40 people worldwide. 

“By identifying this identical genetic 

defect, our results not only provide insight 

into the cause of JPD, but also shed 

light on the control of bone metabolism 

in general,” Whyte explained. 

20 Years of Making a Difference 

For the past two decades, the research 

center has acted as an international resource 

for assisting other physicians with 

difficult diagnostic and therapeutic problems. 

As a result, Whyte and his team serve 

to train and collaborate with orthopedic 

surgeons, geneticists, endocrinologists, 

rheumatologists, and molecular biologists 

in the description, treatment and research 

of bone diseases in children. 

“The center is an excellent example 

of how this research is taken to the bedside,” 

said Perry L. Schoenecker, M.D., 

chief of staff at the St. Louis Shriners 

Hospital. 

“People often think of research as 

laboratory work, but this is research that 

is making a difference today in the lives 

of the children we serve.” 

Alex and his family say they are indeed 

grateful for the difference the research 

center has made in his life. He 

recently fell down half a flight of stairs 

at school without fracturing. 

“For him to fall and not have anything 

broken is a miracle,” Hunter said. 

Alex, who gives presentations at his 

school to help educate his classmates 

about OI, agrees. 

“The people at Shriners care for you,” 

Alex said. “They’ve made a huge difference, 

I love going there.” 

2004 Conference Hotel Reservation Information 

To reserve your accommodations at the Adam’s Mark Hotel in Dallas, TX, call 1-800-444- 

ADAM or 1-214-922-8000. Be sure to mention that you are coming to the OI Foundation National 

Conference in order to receive the discounted room rate of $109. 

Click on the 2004 Conference Information link on the News & Events page of www.oif.org to find 

a number of links related to the conference, travel, the Dallas area tourism and the Adams Mark 

Hotel. You may also make your reservations online at www.adamsmark.com/dallas, but you will 

not receive the discounted rate using the online booking agent. 


Travel Tips 

Online Airfare 

Airlines are offering discounted fares 

across the board to encourage vacation 

travel. Since the OI Foundation 

cannot negotiate lower group rate fares 

than are currently being offered on line, 

we encourage you to surf the web now 

or contact a travel agent while the specials 

are being offered. 

The OI Foundation will not be recommending 

a single airline. 

IDs are Essential 

Having a state-issued picture ID is 

now essential to air travel, due to increased 

security at airports and ground 

transportation centers. You will be 

asked repeatedly to provide proof of 

identity. 

While a driver’s license is the most 

common and preferred ID, passports 

are permissible, as are work or student 

picture IDs only if accompanied by 

a government-issued ID such as an 

original birth certificate or Social Security 

card. 

To be safe, carry multiple IDs in separate 

bags, if possible. For convenience 

and safety, you might also want to pick 

up a badge holder or ID holder at any 

office supply store, and wear your ID. 

Accessible Transportation 

There are a number of agencies in 

Dallas that specialize in renting accessible 

vans, and they often deliver directly 

to your hotel or the airport. Check out 

pinnacletravel.com (888-894-8747) or 

wheelchair-getaways.com (800-642- 

2042) for more information. 

Getting Beyond Checkpoints 

While posted security signs say noone 

without a boarding pass may go 

beyond the checkpoints, persons assisting 

someone with a disability are allowed 

access all the way to the boarding gate. 

The escort must have a valid ID. 

Airports and/or airlines will also provide 

curb-to-gate assistance to those 

with a disability who are travelling alone. 

Medical Carry-ons 

Travellers are now limited to two 

carry-on bags each, but that restriction 

does not apply to medical equipment, 

supplies, or assistive devices. 

Pediatric Aisle Chair 

Pediatric-sized aisle wheelchairs, 18 

inches off the floor, and narrow enough 

to fit between the rows of seats, are now 

available on some airlines. Call in advance 

to find out if the chair is available. 

Oxygen, Wheelchair Info 

Excerpts from a Q&A on traveling 

can be found on page 12 of this issue. 

Reprints are available by contacting the 

foundation offices, or online at 

www.oif.org. 

There’s still time to participate in the Bone China Tea 

Imagine a fund raiser where you don’t have to 

worry about attire, transportation, weather, food allergies, 

babysitters, dancing ability, access, schedule 

conflicts, or even being on time. In fact, the “event” is 

delivered to your door with the mail. 

The OI Foundation Bone China Tea takes place in 

the comfort and convenience of the invited guest’s own 

home. You tell the Foundation how many people you 

wish to invite, and we’ll send you formal invitations to 

address and forward to your friends and family, asking 

them to “join” the event by staying home and relaxing 

with a hot cup of tea. It’s suggested that the money 

saved on new clothes, babysitters, transportation, and 

other expenses typically associated with a fund-raising 

event be donated to the OI Foundation. 

It’s never too late to participate in this unique 

fundraising event. If you would like to invite someone to 

take part in the Bone China Tea, or would like additional 

information about the event, please contact Jenny Wilson (e-mail JNWILSON@aol.com, telephone (239) 482-6892), 

or the OI Foundation (e-mail BoneLink@oif.org, telephone (301) 947-0083). A small number of invitations are still 

available on a first-come, first-served basis. 



Remember your first conference? More Travel Information 

Conference Fees Continued from back page 

conference, and the event has drawn 

larger and larger numbers of attendees.” 

The Foundation has kept the registration 

fees stable though public and private 

grants to subsidize 

costs, becoming more efficient 

in planning and 

scheduling the three-day 

event, and through the generous 

support of the OI 

community. 

Volunteers have also 

had a great impact, providing key services 

such as staffing the resource room. 

“We also spend a lot of time at the 

bargaining table to keep costs as low as 

possible,” Bradner said. 

Staff and Board members also go 

through an extensive review process 

after each conference, using input from 

the conference surveys, to determine 

where else they can shave a few dollars 

off the budget for the next conference. 

For example, in 2004 the Foundation 

will ship fewer resources to the conference, 

to save more than $1,000 in freight 

charges. The files will be transferred 

electronically, then printed in Dallas the 

Conference can be overwhelming. So 

many people to meet, functions to attend, 

sessions to go to... people often confess 

after the fact that they were “overwhelmed” 

at their first conference. 

The confusion is even greater for those 

who aren’t familiar with the OI community. 

New parents of a child with OI, 

researchers, doctors and even friends 

and coworkers often don’t know which 

way to turn once they leave the registration 

desk. 

The OI Foundation is introducing a 

brand new program to conference in 

Dallas this year. We plan to welcome all 

“newcomers” at an open house, hosted 

by community members who’ve been to 

at least two conferences. 

The volunteers will assist the newcomer 

in choosing relevant sessions to 

attend, answer any questions they might 

have about the conference, and most importantly, 

introduce the newcomer to others 

to help him/her feel more comfortable 

and welcome. 

The open house will be open Wednesday 

afternoon and Thursday morning 

during registration. 

If you’ve been to an OI Foundation 

National Conference two or more times 

and would like to help welcome conference 

newcomers, please volunteer to 

participate by checking the appropriate 

box on the registration form. 

For more infomation about the program, 

contact the Foundation by writing 

to bonelink@oif.org or calling (800) 981- 

2663. 

“The actual cost to the OI Foundation 

for each person attending conference 

is more than $350.” 

week before conference, rather than 

shipped across country. 

An online ordering system will also be 

available to have resources shipped directly 

to the attendees’ homes while 

they’re still attending the conference. 

The Foundation is also limiting the 

number of audio/visual pieces used during 

the conference weekend through a 

more efficient scheduling of speakers 

and session panels. 

“In all, I think our budget is as lean as 

we can possibly make it,” Bradner said, 

“but without some additional sponsorships 

or grants, it will be a challenge to 

keep the 2004 conference in the black.” 

The actual cost to the Foundation for 

each person attending conference in 

2004 is more than $350. 

Registration fees for each guest do not 

Access-Able Travel Source is a 

one-stop resource for disabled 

travel planning and information, 

which includes: 

• Lists of equipment rental and repair 

shops, 

• Reviews of attractions and details 

about accessibility, 

• Lists of lodgings with alert kits, 

roll-in showers, alert kits, closed 

caption TV, alert kits, or any combination 

of services, 

• Aiport accessibility tips and support 

information, and 

• An extensive list of disability 

lodging and travel and web sites. 

www.access-able.com 

(303) 232-2979 

even fully cover the costs of their meals. 

The costs associated with audio/visual 

support, child care, teen activities, staff 

travel, freight, and all the expenses associated 

with bringing 

the nation’s top doctors, 

researchers and subject 

matter experts to the 

event to speak at the 

sessions and panels 

must be covered by the 

Foundation. 

Although sponsorships, exhibitors and 

grants increase each year, the OI Foundation 

must cut back on other areas of 

the budget to pay the conference bills. 

Board members are committed to 

keeping the conference affordable as 

they set fees for each conference. 

If you would like to make a contribution 

to help cover conference expenses, 

or know of a vendor who 

might be interested in exhibiting or 

sponsoring an event at conference, 

please contact the Foundation offices 

at (800) 981-2663 or by writing 

to bonelink@oif.org. 


Spotlight 

Physical therapy brings relief from pain for mother of two 

Kathleen Kowis has what she calls “severe Type I OI.” 

In fact, when her type was diagnosed through genetic 

testing, the results suprised her family and doctors, who had 

placed her as a more severe type based on her symptoms 

and medical history. 

“In spite of that, I’m not sure I did everything I could do 

growing up to stay healthy,” Kathleen confessed. “I guess 

the mindset was ‘if I’m not breaking, why see a doctor?’” 

When Kathleen was near the end of her second pregnancy, 

the pain in her 

knee was so bad she 

couldn’t stand, much 

less walk, maintain her 

household, and care for 

her infant daughter. 

“It was probably the 

additional weight I was 

carrying due to the pregnancy,” she recalled, “but I had also 

fallen and fractured that kneecap 5 years earlier.” 

Complicating matters, a job opportunity for her huband, 

Greg, took their brand-new family to N.C., too far from 

extended family for them to be able to receive regular 

support and assistance. 

Visits to local doctors unfamiliar with OI were not reassuring. 

One looked at her x-rays and informed her she had 

“83 year-old looking knees.” She was told to stop walking 

on it, not to exercise, and to consider having a knee replacement 

surgery that couldn’t guarantee results. 

“It was frightening,” Kathleen said. “When Sean was 

born, the pain was bad enough that I was too scared to 

carry him. I was dragging him around the house in his 

bassinet!” 

By the time her knee pain was bad enough to send her in 

search of help, she had tendon and ligament damage as well 

as damage to the bones in her knees. 

Kathleen traveled to Baltimore to meet with Dr. Shapiro 

(a member of the OI Foundation’s medical advisory council) 

and a group of specialists at the OI Clinic at Kennedy 

Kreiger, who recommended physical therapy as a means of 

controlling the pain. 

“It turns out there were a series of problems, and not just 

in the knee,” Kathleen said. 

One of the biggest contributing factors to the knee 

problems turned out to be the curvature in her legs due to 

repeated micro-fractures through the years. The bowing 

was turning her foot, impacting her gait and adding stress to 

the knees. 

“A simple insert in my shoe from the physical therapist 

made a world of difference,” Kathleen said. “In fact, when 

I walk barefoot— without the special insert— I can notice 

the increased pain immediately.” 

However, her physical therapy was more involved than 

just the insert. Kathleen spent months receiving special antiinflammatory 

treatments using electrodes to draw the 

medication to the right spots in her knees. She also was 

taught a series of mild exercises to help strengthen the 

muscles supporting her knees. 

“It could have been much worse, and I might have 

resorted to surgery,” she said. “Nobody was giving me any 

options other than 

that until I met with 

“I never saw a physical therapist as a child, and 

believe it really would have made a difference. 

I’d like to assume all kids with OI today have one.” 

Dr. Shapiro and the 

team at the OI 

Clinic.” 

She said hard 

work brought her 

success in managing 

the pain without surgery. It required lots of research, selfeducation 

about the issue, and three or four opinions from 

different doctors before she was ready to make a decision 

about how to treat the pain. 

“I learned through all this that you have to stick to it and 

not give up when you come across a medical problem. You 

simply have to keep fighting until you find someone who is 

willing to work with you,” she explained. 

“Surgery is not necessarily a pain management tool,” she 

said. “Once I found someone knowledgeable about OI and 

willing to listen to what I’d learned, more options were 

available to me. It was almost like I had to be my own 

health advocate.” 

Today Kathleen relies on yoga to control stress and water 

therapy to stay strong, takes the occasional anti-inflammatory 

medication when needed, and regularly meets with a 

physical therapist. 

“I never saw a physical therapist as a child,” she said, 

“and believe it really would have made a difference. I’d like 

to assume all kids with OI today have one.” 

She believes that some simple exercises and early interaction 

with “the right people” could make all the difference 

in whether or not children suffer from joint pain as adults. 

“But most of all you have to know yourself, and search 

for as many options and as much information as you 

possibly can,” she said. 

The pain’s not completely gone, and Kathleen has to be 

diligent with sticking to her exercises and using the shoe 

insert, but she’s keeping up with her two pre-schoolers, 

Sean and Rachel, now 3 and 4 years old. 

“Because I didn’t give up, I’m now walking, taking the 

kids to school, shopping, keeping up with the house... I 

consider myself lucky,” she said. 


Honorary & Memorial Donations 

In Honor of... 

Ms. Rhonda 

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Our Customers 

U.S. Alloys, Inc. 

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In Memory of... 

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Bayonne Medical 

Center 

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Mr. & Mrs. M. Battaglia 

YMCA - Mtn. Lakes, NJ 

Emily Winn 

Joseph & Beverly 

Steinmetz 


Cornerstones 

Member reflects on an ‘almost horrible’ talent show 

by Anna Lennarston 

OI Community Member 

“It can’t be that bad,” I thought to 

myself, even though I regretted ever 

signing up for the talent show. “Tonight 

would be one of the worst nights of my 

life… maybe, ” I thought. 

“Want to come see the dining hall 

where you’ll play tonight?” questioned 

my mom. 

“Sure.” 

Inside there were tons of shiny, 

polished round tables, and a 

humongous wooden stage. On the 

stage was a shiny, black baby grand 

piano. 

“Wow. A baby grand piano! Is 

this what I’m really going to play on 

tonight?” I asked. 

“Well, it’s the only one here, so… 

yes!” my mother answered. 

That night I put on my elegant, 

silky dress for the show and joined my 

mom in the dining hall. Looking around 

the room, you could tell they had 

certainly fancied things up since we 

Web Spots 

Useful or informative sites for the OI community 

Accessable Travel Source 

www.access-able.com 

(Page 15) 

Adam’s Mark Hotel, Dallas 

www.adamsmark.com/dallas 

(Page 13) 

American Society of Travel Agents 

www.astanet.com 

(Page 12) 

American Society for 

Bone & Mineral Research 

www.asbmr.org 

(Page 9) 

were there in the afternoon. There 

was a blue-checkered tablecloth, a set 

of sparkling silverware for every guest, 

and two cream colored candles on 

each table. Of course, at the front was 

the gigantic stage (which now had 

microphones, too) and the large, 

dazzling piano. 

When dinner was done the talent 

show began. First was a girl singing 

this really wacky song, then someone 

tap-danced. After him, the announcer 

called my name. 

“Now, Anna Lennartson will play 

‘Brave Night’ by Moritz Vogel.” 

Walking up to the piano, my 

flowered, blue dress shoes clicked on 

the hard stage. Sticky, cold sweat 

started running down my forehead. My 

heart began to pound loudly in my 

chest. Putting my hands on the black 

and white keys, I realized they felt 

clammy and frozen. I turned my head 

and saw more than 400 pairs of 

colorful, staring eyes looking at me and 

waiting for me to play. In the large 

The following organizations or services were featured in the pages of this newsletter: 

MN Advisory Committee on 

People with Disabilities 

www.accessmaze.org 

(Page 9) 

National Brain Tumor Foundation 

www.braintumor.org 

(Page 19) 

OI Clinic at Kennedy Kreiger 

www.osteogenesisimperfecta.org 

(Page 16) 

Pinnacle Travel 

www.pinnacletravel.com 

(Page 14) 

Direct links to these organizations can be found on www.oif.org. 

crowd was my mom, and I knew that 

she was waiting, too. As I began the 

song my brain kept telling me NOT to 

make a mistake… and I didn’t. 

The song came out beautiful, 

smooth and pleasant, just the way it 

was supposed to. All of a sudden the 

audience started clapping and cheering 

wildly. There was my mom, smiling the 

biggest. I smiled back at her, and at the 

rest of the audience, feeling relieved as 

ever. I had actually played the piano in 

front of over 400 people! 

Editors Note: Until we received 

this submission, we had no idea how 

nervous Anna was… she exuded 

grace and performed flawlessly at 

the 2002 National Conference 

Talent Show. We look forward to an 

“encore performance” from Anna at 

the 2004 Conference in Dallas! 

Invitations to participate in the 

talent show will be included with 

your Conference Registration 

Confirmation Packets. 

St. Louis Hospital’s Center for 

Matabolic Bone Diseases and 

Molecular Research 

www.shrinershq.org/shc/stlouis/ 

mru.html 

(Page 1) 

VSA Playwright Discovery Awards 

www.vsarts.org/programs 

(Page 9) 

Wheelchair Getaways 

www.wheelchair-getaways.com 

(Page 14) 


Article 

Understanding medical research & literature 

by Hariett Patterson, MPH 

Reprinted with permission from 

The National Brain Tumor Foundation 

When diagnosed with a serious 

illness or disorder, many people want 

to learn more about their condition and 

possible treatments. At some point, 

they may wish to consult medical 

journals and read research articles to 

find out about new treatment options. 

However, complicated medical and 

scientific jargon can be an obstacle to 

obtaining vital information. By following 

a few basic guidelines and learning 

a few research terms, the world of 

medical literature can become more 

understandable. 

To begin, it is helpful to know the 

basic structure of scientific papers. 

They generally begin with an abstract 

(a brief summary). Reading the 

abstract is a great way to get an 

overview of what the author was 

researching—the main question of the 

study—and the results. The rest of the 

paper will usually include the following 

sections: an introduction or background, 

methods, results, discussion 

and bibliography. 

The introduction or background 

section discusses the reasons the 

researcher was doing the study, and 

typically cites the previous studies. The 

methods section explains how the 

study sample participants were selected 

and how the study was conducted. 

(For example, through personal 

interviews or by examining hospital 

records.) The results section gives the 

data from the study and tends to 

present a lot of numbers (percentages 

and statistics). In the discussion 

section, the researcher analyzes the 

results in relation to the original 

research question and draws conclusions. 

The discussion section is generally 

less technical than the other 

sections of the paper. It can be a good 

way to get a summary of the findings 

and what they mean. 

Remember that research findings 

should be carefully interpreted. It is 

helpful to look for information in 

journals that are “peer-reviewed.” This 

means that other scientists and researchers 

in the field have had a 

chance to read and evaluate the 

studies before they are accepted and 

published by the journal. Major medical 

journals such as the Journal of the 

American Medical Association 

(JAMA) and the New England Journal 

of Medicine are peer-reviewed. 

Internet sites such as Medscape 

(www.medscape.com) and Pubmed 

(www.pubmed.gov) have directories 

of peer-reviewed journals and allow 

you to search by topic of interest. 

Some Internet sites are not 

reliable. If you read about a study on 

the Internet that sounds interesting and 

want to know more about it, it is a 

good idea to search the major research 

databases to see what they have 

published on the topic. 

Here are a few key terms and 

definitions to get you started: 

Clinical Trial – A research study 

conducted with patients to scientifically 

determine the effectiveness of new 

treatments or to improve existing ones. 

Each study tries to answer scientific 

questions and to find better ways to 

prevent, diagnose or treat diseases or 

disorders. 

Confidence Interval – A statistical 

range of values for a particular 

variable or characteristic, set up so 

that the variable lies within that range. 

(Example: The 95% confidence 

interval for height is 5’9” to 6’. This 

means that 95 out of 100 people will be 

within that height range.) Generally, 

the more narrow the confidence 

intervals, the more reliable the study 

results. 

Control – An individual or group 

used as a standard of comparison for 

checking or verifying the results of an 

experiment. 

Double-blind Study – A type of 

study in which neither the doctors nor 

participants know who is receiving a 

drug and who is receiving a placebo. 

This method helps to assure objective 

results by avoiding prejudice either for 

or against a treatment. 

Placebo – An inactive substance 

given as a control (standard for 

comparison) in an experiment to test 

the effectiveness of a drug. 

Qualitative Research – A study 

with findings that are not arrived at by 

looking at statistics. This type of 

research generally looks at opinions 

and personal viewpoints. 

Quantitative Research – A 

study that uses measurements and 

statistical methods to identify causes, 

make predictions, and determine if the 

findings of a study can be applied to 

the general population as a whole. 

Randomized Control Trial – A 

type of study where the participants 

are randomly selected to receive either 

a placebo or the treatment being used. 

Sample – The group of people 

that participate in a study. The sample 

may be random or may represent a 

particular population group. 

These terms are a good starting 

point to understanding medical research, 

but the best way to become 

more comfortable with scientific 

research is to start reading. 

Be sure to view the OI Foundation’s series of related fact sheets, including: Talking With Your Doctor, 

Talking With Your Orthopedist, and How To Bring Out the Best In Your Health Care Team. These and 

many other healthcare resources are available online at www.oif.org or by calling (800) 981-2663. 


Nonprofit 

Organization 

U.S. Postage 

PAID 

Suburban MD 

Permit #5857 

Conference 

Registration 

Inside! 

Setting Conference Fees a Challenge 

for the Foundation, Board of Directors 

Conference 

Information 

Choosing the best location for the biennial 

conference is the first challenge 

in hosting such a large event (see the 

Spring 2003 issue of Breakthrough), but 

it’s certainly not the biggest challenge of 

the planning process. 

The biennial conference is one of the 

largest line items in the OI Foundation’s 

budget. Without careful planning, hosting 

the conference can have a significant 

impact on all of the Foundation’s 

support and information programs. 

“Planning for the national conference 

is a constant balancing act,” according 

to Bill Bradner, the OI Foundation’s Director 

of Communications and Events. 

“We’re striving to constantly increase 

the level of service and the scope of the 

program and events at conference, while 

keeping registration fees as low as possible 

to make it affordable for everyone.” 

The conference registration fees have 

not significantly increased in the last 

eight years, due in large part to the efforts 

of the Board of Directors and the 

Conference Planning Committee. In 

fact, in 2002, conference fees were lowered, 

thanks to the efforts of a group of 

board members and volunteers who created 

and managed the Fine Wines, 

Strong Bones fundraising event to offset 

conference costs. 

Unfortunately, while the registration 

fees have remained stable over the past 

eight years, the costs associated with 

hosting the conference have increased 

significantly. 

“In the last ten years, the charges for 

audio/visual support and meals at hotels 

have almost tripled, industry wide,” according 

to Bradner. “In spite of that, the 

Foundation’s managed to increase the 

number of speakers and programs at 


Deadlines 

page 9 

Sessions & Topics 

page 10 

Registration 

Center Insert 

Namebadges Required 

page 11 

Wheelchair/Oxygen Travel 

page 12 

Hotel Reservations 

page 13 

Travel Tips 

page 12,14 

“Buddies” Wanted 

page 15

Breakthrough - Osteogenesis Imperfecta Foundation

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