Breakthrough - Osteogenesis Imperfecta Foundation

B reakthrough
The Newsletter of the Osteogenesis Imperfecta Foundation
Volume 29, No. 2 Spring 2004
Fourth scientific meeting focused on Type I OI
The OI Foundation’s fourth
scientific meeting, Mild Forms of
OI; Molecular Basis, Natural
History and Treatment, was cochaired
by Peter H. Byers, M.D.
and Michael Whyte, M.D. Nineteen
investigators and clinicians, nine
observers, and two presenters with
mild OI participated.
Key topics for discussion were;
social context, clinical aspects and
molecular basis of OI, and preventative,
genetic and drug therapies
and treatments. The result is a better
idea of where to focus research
efforts in the coming years, improved
clinical knowledge, and
progress towards the Foundation’s
Board exceeds 2003 challenge grant by $69,000!
In 2002, a generous supporter offered
to match up to $100,000 of all new and
increased donations raised by OI Foundation
board members. Issued anonymously,
this challenge served as an extra
source of motivation for our board
members, and they raised more than
$49,000 in new gifts. The end result
was $98,000 of increased donations for
the year.
The anonymous donor re-issued the
challenge in 2003: “find $100,000 in
new gifts in 2003, and I’ll match it.”
The board members stepped up to
the challenge, determined to capitalize
on what they’d learned about fund-raising
the previous year and earn every
penny of the matching funds in 2003.
Leslie Buchbinder, Co-chairs Drs. Whyte and
Byers, and Executive Director Heller An Shapiro
were quite pleased with the opportunities for improved
care made possible by the Type I OI scientific
meeting.
goal of better treatments and a cure
for all forms of OI (see page 7).
The results have been tallied, and the
OI Foundation’s 17 board members
raised more than $169,000 in new gifts
in 2003.
The total contributions of more than
one-quarter million dollars will be used
to support the Foundation’s new and
on-going information, research and support
programs.
“We’re simply overwhelmed with every
donor’s generosity,” Board President
Jamie Kendall said.
“We can’t say thanks enough– for the
matching funds, and for inspiring us to
realize how much we can do if we put
our minds to it.”
The 2004 matching grant challenge is
$150,000.
The meeting generated huge support
from families and adults living
with mild OI. In preparation for the
meeting, more than 100 people
spent hours responding to a detailed
survey about their symptoms,
complications, and how mild OI
affects their lives. The data collected
was shared with the clinicians
and researchers at the meeting.
(See insert.)
The social context sessions included
discussions on the “invisibility” of
Type I OI, the OI Foundation’s
perspective, child abuse allegations
and the transition from pediatric to
adult medical care.
Continued on page 9
What’s Inside
President’s Message .................. 3
Fundraising Briefs ....................... 4
News Briefs ................................. 5
Q&A: Early Intervention ............... 6
OI Fdn. Accomplishments ........... 7
Type I Meeting Summary ............. 8
Spotlight: Amy Jackson ............12
Memorials & Honorariums .......13
Fashion Flair ...............................14
Cornerstones .............................15
2004 National Conference
Changes in 2004 .......................... 9
Schedule ....................................10
Sessions .................................... 11
Sponsors ....................................16

Breakthrough
The Newsletter of the
Osteogenesis Imperfecta Foundation, Inc.
Editor: Bill Bradner
Contributing Writers: Brett Eisenberg,
Jeffrey Garrett, Jamie Kendall and Neeru
Sharma.
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
on-line store at www.oif.org.
Executive Director
Heller An Shapiro
hshapiro@oif.org
Snapshot
70
150
645
Information
Resource
Requests
(1st Quarter FY 2004)
289
By Phone
By Email
By Mail
Other
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
Director of Development
Jeffrey Garrett
jgarrett@oif.org
Information & Resource Director
Mary Beth Huber
mhuber@oif.org
Information & Resource Specialist
Marie Maffey
mmaffey@oif.org
Assoc. Dir. of Development
Marcel McGee
mmcgee@oif.org
Connecting through
WWW.OIF
.OIF.OR
.ORG
50,000
45,000
40,000
35,000
30,000
25,000
20,000
15,000
10,000
5,000
0
35,325
Visitors, 1st Quarter 2003
compared to 1st Quarter, 2002
43,679
31,164
40,119
32,508
Jan Feb Mar
41,907
2003
2004
Database Manager
Desiree Swain
dswain@oif.org
General Correspondance:
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
These two charts provide an at-a-glance snapshot of the support provided to
the OI Community by the OI Foundation’s national office.
More detail on the Foundation’s activities is provided in each year’s annual
report. The report for the 2003 fiscal year is now available online or by mail.
Copies will be mailed to all donors.
To request a copy by mail, write to Development Director Jeffrey Garrett,
send an email to jgarrett@oif.org or call (800) 981-2663.
Breakthrough Spring 2004 Page 2

Jamie Kendall
President’s Message
Hello OI Community Friends,
It has been a very busy time for the OI Foundation – and that’s how we like it!
The board of directors spent considerable time and energy since I last wrote formulating
our next strategic plan. As a starting point for our efforts, we looked to the surveys that we
solicited from the OI Community. We received over 500 surveys – and to those of you who
spent your time and thought responding to us, thank you! It was useful to see that more than
ninety-five percent of respondents feel the OI Foundation is currently accomplishing its mission
(53% strongly agree, 44% agree). It was also very illustrative to the board that among respondents,
funding research received the highest priority rating (56%), followed by providing information
(47%), educating medical professionals (29%), liaison with medical professionals (25%) and mutual
support (15%). (Ratings are +/-6%).
With this information in mind, the board came up with the following strategic objectives: expanding
our research program and impact, being the premier provider of credible information on OI, increasing our
constituent base, and finally, raising revenue to accomplish these goals.
While of all our work is extremely important, we heard loud and clear from our community that more
research (both clinical and basic) is needed, and that the Foundation needs to play a crucial role in making
this happen. You’ll see in this issue, much is going on in the research arena, yet there is so much more to
do. In the research insert you can learn about the current research projects funded by the Foundation and
see the results of the Type I survey. The front page and page 7 both have information from the Type I
Meeting. As you see, there is a lot going on, but always more to be done. With this in mind, I hope you’ll
consider taking part in our annual research appeal this summer (see the back page of the insert).
In addition to strategic planning, the OIF has been busy participating in and directing important
meetings to help us further our mission. Board member Susie Wilson, Heller An Shapiro and I attended
the National Health Council (NHC) Leadership Conference in February, where we learned more about
how other Voluntary Health Agencies tackle such issues as fundraising, board governance, and serving
constituencies. Participants included CEOs and board leadership from 26 national health organizations of
all sizes. As a result of this meeting, the Foundation will be focusing on diversity (how do we reach out to
a broader audience within the OI community), and health literacy (how do we ensure that our information
is accessible to those who need it?).
The Foundation was also invited to participate in a meeting devoted specifically to clinical OI research,
sponsored by the Charitable Research Foundation and the Kennedy Kreiger Institute, on March
6th. Forty experts in the field met in Baltimore to discuss strategies to advance clinical investigations and
improve standards of care for individuals with OI, and it was exciting to see their energy and enthusiasm.
The proceedings of this meeting are available at: http: www.osteogenesisimperfecta.org/conf.jsp.
The OI Community has been very busy, as well. Page 4 lists many of the community events that
have taken place over the last quarter. It’s a truly impressive amount of energy spent supporting the
Foundation and the community as a whole– thank you. We wouldn’t be able to accomplish half of what
we do without your efforts and support.
Finally, I would be remiss if I didn’t mention our 14th Biennial Conference being held June 24 – 26 th
in Dallas, Texas. On pages 8, 10 & 11you’ll find a full conference schedule. The conferences are
always a time to learn, share, grow and make friends! I sincerely hope you’ll be able to join us.
Happy Reading!
Jamie D. Kendall
President, OI Foundation Board of Directors
Page 3 Breakthrough Spring 2004

Fundraising Briefs
by Jeffrey Garrett
OI Fdn. Development Director
Corporate Sponsors Help
Make Conference A Success
The OI Foundation greatly appreciates
the companies who are helping to
support the 2004 National Conference,
June 24-26, 2004 in Dallas,
TX.
These generous corporate partners
assist the Foundation in providing the
outstanding level of speakers, events,
workshops and networking opportunities
that participants have come to
expect.
As of the press date of this issue,
the following companies signed on as
conference sponsors:
• Alliance for Better Bone Health (a
partnership between Proctor &
Gamble and Aventis Pharmaceuticals),
• Children’s Hospital of Omaha,
• GM Mobility,
• Merck and Co., Inc.,
• Novartis,
• Permobil, and
• Pega Medical.
Roundtable Offers Learning
Opportunities
The National Conference offers
many excellent learning opportunities,
one of which is how to raise funds for
the OI Foundation. If you want to
learn more about fundraising, especially
organizing special events, or are
willing to share your expertise with
others, plan to join the Fundraising
Roundtable during Saturday’s lunch at
the 2004 Conference.
Volunteer Fundraisers Raise
Critically Needed Funding
Without the strong support of our
volunteers, the OI Foundation simply
could not do the work we do on
behalf of people with OI. We are
grateful for the support that these
fundraisers provide:
Roll-N-Stroll in Stillwater, OK,
raised $3,635 for OI research.
Allison Phillips organized this event on
behalf of her brother, Matthew. Her
parents are Laura and Mark Phillips.
This year’s event was held April 24,
2004.
Bone Bowl held in Minneapolis,
MN, raised $1,806 for general
support in December 2003. Event
organizer and Foundation board
member Michael Johnston organized
the event in honor of his daughter,
Emma.
The first annual Baylee Taylor
Memorial Bowl-A-Thon, organized
by Jennifer Taylor, on April 27, 2004
in Roseburg, Oregon, raised more
than $10,000. The event is in
memory of her son, Baylee, who
passed away in July 2003
The 5th Annual Connecticut
Walk-a-thon, organized by Paula
Furber, on May 8, 2004 in Montville,
CT, raised $18,000.
On May 20th, the 4th Annual Fine
Wines, Strong Bones wine and
cheese party and silent auction in
Washington, D.C., is expected to
raise $15,000 to support the annual
conference.
Carol Goebel will be hosting a
Walk-a-thon in Cinnaminson, NJ,
June 6.
Summer Magic - a wine tasting in
Margate, NJ, will be hosted by
Vaughan and Margie Reale and Jerry
Johnston, June 25, 2004
The annual Miracle Michael Golf
Tournament, organized by John &
Beth Shultz, to be held July 26, 2004
in Naperville, IL. The event honors
the memory of their son, Michael.
They are pleased to announce that
the event has been given a permanent
date of the last Monday of July each
year.
Chery Sacchetti will host a seafood
festival, Bash by the Bay, August 15
in Margate, NJ.
For more information, or to support
any of these events, please contact
the Development Department at the
OI Foundation by calling (800) 981-
2663 or emailing to jgarrett@oif.org.
2003 Sweepstakes Winners
Announced
The winners of the OI Foundation’s
2003 Sweepstakes grand prize — a
seven day, six night vacation trip for
two, including airfare and hotel stay—
are Kerry and Erika Zemp.
The Sweepstakes netted $19,481,
the most raised since it began in
2002.
Special thanks go to John and Beth
Shultz for providing the grand prize.
We also thank everyone who participated
and made it the most successful
sweepstakes ever!
Support Research
The OI Foundation will shortly be
sending out its annual appeal to
support the research funding that the
Foundation provides to continue
working for a cure and better treatments
for people with OI.
Please watch your mailboxes for
this important opportunity to support
vital research!
Leave A Legacy
To learn how you can support the
ongoing work of the OI Foundation
through estate planning, please
contact Jeffrey Garrett, Director of
Development at (301) 947-0083 or
by email at: jgarrett@oif.org.
Breakthrough Spring 2004 Page 4

Board member starts FL support group
A new OI Support Group had it’s first meeting in
February at the home of Jenny & Susie Wilson in Fort
Myers. Long-time members of the Foundation as well as
newcomers came from as far as Tampa on the west coast
and Cocount Creek on the east coast.
Heller An Shapiro, OI Foundation Executive Director,
and Jamie Kendall, President of the OI Foundation Board
of Directors, were in FL for the National Health Council
Leadership Conference, and joined the group to discuss
the latest happenings within the Foundation and to provide
updates on research and the OI National Conference.
It was a great day, where long lasting friendships were
renewed and new friendships were made. The next
meeting will be held on August 7 at the Shriner’s Hospital
in Tampa. For more information, contact Susie Wilson at
OISLW@aol.com.
OI Swimmer trains for Paralympics
Kara Sheridan (featured in the May/June 2001 issue of
Breakthrough) will be in Colorada Springs this summer at
the Olympic Training Center, preparing to compete in the
swimming events at the 2004 Paralympics this fall.
At the 2002 National Conference in Orlando, she was a
guest speaker at the “Becoming a Paralympic Athlete”
session for teens and young adults. The session is still
available as a webcast on the OI Foundation’s website.
We congratulate Kara on her continued success, and
wish her the best of luck in Athens.
News Briefs
Susie & Jenny Wilson (front, left) and members of the FL community
met with Founder Gemma Geisman (standing, left) Board Pres.
Jamie Kendall (seated, 2nd from right) and Exec. Dir. Heller An
Shapiro (center, back row) at their first support group meeting.
Kettering U seeks co-op applicants
Kettering University in Flint Michigan is seeking incoming
freshman applicants for the 2004-2005 school
year. Students receive a scholarship and participate in a
co-op program where they rotate between school and
work for 12-week rotations. The program takes 5 years
to complete, and most students receive a full-time position
at the end of the program.
The aim of the scholarship is to encourage people with
disabilities to major in engineering or business. Applicants
must be considered disabled according to the ADA.
For more information, contact OI Foundation board
member Neeru Sharma at LittleRani71@aol.com.
Loans and grants available for some
rural disabled homeowners
The Rural Housing Service, a division of the U.S.
Department of Agriculture, offers up to $7,500 in grants or
loans to make homes accessible for people with disabilities
in rural areas. Find out if you qualify and how to apply at
www.rurdev.usda.gov or by calling (202) 720-4323.
Make a difference...
WID launches new e-newsletter
The World Institute on Disability has just launched a new
e-newsletter called EQUITY, which seeks to provide
members of the disabled community with the resources,
information, and inspiration to overcome poverty. To
subscribe, or to view the newsletter online, visit
www.wid.ord/equity.
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, check the online
calendar, call us at (800) 981-2663, or write to bonelink@oif.org.
Page 5 Breakthrough Spring 2004

Q & A
Introduction
All children grow and
develop at different rates,
but when a child has a
condition such as OI,
parents have additional worries about developmental
delays. Early intervention programs are available to
identify and treat very young children in an effort to
minimize the long-term impact on the child of any developmental
delay.
What is early intervention?
Early Intervention is a federal program that originated
in the 1975 Education of All Handicapped Children Act.
In its current form as Part H of the Individuals with Disabilities
Education Act (IDEA), the law helps states
provide services to babies and toddlers under the age of
36 months who have been diagnosed with a disability, who
are not learning and growing at the same rate as other
children their age, or who are at risk of having developmental
delays in their learning and growing. These programs
are not specifically designed to treat OI, but children
with OI usually qualify for services. To learn more
about IDEA, check out the website at
www.ideapractices.org.
Why is early intervention so important?
Research has shown that the time between birth and
age 36 months is a critical developmental period in a
child’s life. These months offer a window of opportunity
that will not be available later. Early intervention programs
minimize and in some cases prevent delays in development
of infants and toddlers with disabilities. They can decrease
the need for special education and related services when a
child enters school, and increase independence. Children
whose special needs are identified and addressed during
these crucial early years have a greater chance of reaching
their full potential.
Are all early intervention programs the same?
Federal law allows each state to customize their Early
Intervention program to match available resources, so
there is significant difference between the states. Eligibility
requirements and fee schedules also differ from state to
state. Information about programs offered by your state
can be found on the Families & Advocates Partnership
Answers to Members’ Questions
What Is Early Intervenion?
For Education web site www.fape.org. In most situations
children with OI will qualify.
How does early intervention work?
Children qualify for inclusion in an Early Intervention
program either because they are on the state’s list of
automatically eligible conditions or after being assessed by
a specialist. In most jurisdictions, OI, because it is a
genetic condition, automatically qualifies the child for
services. Programs are designed to provide support for
the child’s strengths and therapy to improve the child’s
weaknesses. In some areas, services are offered at your
home, while other localities may require going to a center.
A comprehensive early intervention program addresses
five areas of development, with specific services customized
to meet each child’s particular need:
Breakthrough Spring 2004 Page 6
√
√
√
√
√
Cognitive development: how a child thinks/learns,
Physical development, including vision and hearing:
usually involves physical therapy,
Language, speech, and communication,
Social-emotional development, and
Adaptive/self-help skills development.
What kinds of services will a child need?
Children who have OI often benefit from physical and
occupational therapy at an early age, particularly to
address delays in gross motor development. Some children,
because of muscle weakness associated with OI,
may also need speech therapy. Children with bone deformity
may need assistance developing fine motor skills.
Talk to you pediatrician, geneticist or OI specialist
about how an early intervention program might benefit
your child.
How can I learn more about services in my
hometown?
Support for locating services and navigating through
the application process can be found from a number of
sources including your pediatrician, local department of
health, and local public school system. Other organizations
such as Families and Advocates Partnership for Education:
(www.fape.org), Family Voices (www.familyvoices.org),
PACER (pacer@pacer.org), and Kinderstart
(www.kinderstart.com) all offer useful information for
families of children with OI.

Article
Clinicians, researchers share data & insights
Nineteen clinicians and researchers, along with
nine observers and two adults with mild OI, participated
in the 1st Type I OI scientific meeting. Following are
brief excerpts from the meeting summary, which is
available online in its entirety at www.oif.org/research.
Child Abuse Allegations and Mild OI:
About 15% of the total number of diagnostic tests
are requested because of a child abuse allegation.
About 6-11% of these tests result in a positive diagnosis.
In most of these cases, a clinical diagnosis of
OI has already been made.
Transition from Pediatric to Adult Models
for Continuing Health Care: The transition should
be purposeful and planned. Children age 6-12
should be encouraged to speak directly to the doctor
with the parents assistance, and take part in making
decisions. Teens age 13-18 should take full responsibility
for making and remembering appointments,
speaking with the doctor, and obtaining medications.
Young adults age 19-21 should be able to
identify care, determine how they will pay for it,
and transfer medical records.
Hearing Loss in Mild OI and its Treatment:
Hearing loss is most common in Type I OI, least
common in Type IV. The severity, occurrence, or
type of hearing loss is not correlated with any
clinical feature. Audiometry is recommended for
children with OI if hearing difficulty is suspected.
For a person without symptoms, a baseline test at 10
years of age and repeat tests every three years is
recommended.
Skeletal Changes in Adults with Mild OI:
Treatment in OI Type I should be based on non-OI
treatment. Rodding is appropriate for recurring
breaks in one spot, or severe angulation. Compression
fractures of the spine are not currently being
treated with vertebroplasty because of concerns
about additional fractures.
Pregnancy in Mild OI: A 1996 survey of
women with mild OI showed that most have normal
pregnancies. In 2002, a retrospective study of 100
women showed that half had mild-severe back pain
during and after pregnancy. A 2001 study showed
that the only reason to perform a C-section when
the child has OI is if it is obstetrically necessary.
Familial Variability in Mild OI: The
Montreal Shriners Hospital for Children studied 132
children with mild OI and 36 parents with mild OI.
85% had blue sclerae, 17% had dentigenesis
imperfecta. The children had lower bone mineral
density than their parents.
Lessons from Osteoporosis: Correct lifting,
good posture, protecting the spine, strength training,
keeping periods of bed rest brief (3-4 days), using a
hard mattress, and lying on your side with hips and
knees flexed all contribute to decreased fractures.
Habilitation and Re-habilitation: Because
muscle strength correlates with ambulatory status,
maintaining muscle mass is likely to support
ambulation. Treatment in mild OI should focus on
restoration of function, strengthening, use of gait
aides, orthotics and adaptive equipment to maintain
even balance.
An Approach to Treating Mild OI in Adolescents
With Fractures: Reasons to treat people
with mild OI using bisphosphonates include: Increased
risk of fractures due to sports injuries, lack
of calcified cartilage, or psychosocial issues. Reasons
not to treat include: no studies in mild OI with
bisphosphonates, pregnancy risk is higher, no
documentation of decreased fracture incidence
resulting from treatment, and side effects such as
weight gain and delayed fracture healing.
Bisphosphonates in Mild OI: Criteria for
treating mild OI children with bisphosphonates
include: if their BMD is less than 2 Standard Deviations
from the norm, or if BMD was progressively
decreasing or stationary, or if they had bone pain, 3
or more fractures per year for two consecutive years
and vertebral crush fractures. There is a concern
that after 2-3 years of treatment the bone shows
defective remodeling, it is more brittle, and strength
decreases. Suggestions are to try smaller doses and
increase the interval between doses. The censensus
at the meetins was: if you don’t need bisphosphonates,
don’t use them.
Molecular Genetic Approaches to Treatment
of Mild OI: One way to look at OI is to view it
as a failure of the osteoprogenitor lineage (the
inability of a generation of cells to develop healthy
bone). Bone disease may be caused by the ability of
the lineage to respond (or not) to problems. In OI,
the presence of a mutation makes cells become less
efficient. In order to produce the normal amount of
osteoblasts, OI bone compensates by making more
precursor cells. This could result in cell fatigue and
premature cell aging. A protein being studied in
mice that improves bone remodeling may produce a
cure for mild OI.
Page 7 Breakthrough Spring 2004

Conference Information
Conference schedule, events updated in 2004
New features, great speakers,
and more social opportunities for
attendees of all ages will make the
June 24-26 National Conference the
“best ever.”
We’re very pleased to announce
that the Opening Session speaker will
be Randy Graise, a professional
motivational speaker with OI, who
will speak on self esteem, overcoming
negative attitudes, and coping strategies.
When he is not speaking on
disability-related issues, Randy is
working with youth either as a
speaker or mentor. He’s been named
“Big Brother of the Year” twice by
Big Brothers, Big Sisters of Greater
Lansing, MI, and is known for his
positive impact. It was his ‘no excuses’
attitude that helped him mentor
a 13-year old at-risk youth to become
an 18-year old high school
honor graduate.
The research update will be
delivered by our Medical Advisory
Chair Dr. David Rowe. “Research;
The Future Is Closer Than You
Think” will be presented at the closing
session on Saturday. Dr. Rowe will
discuss recent scientific breakthroughs
and ongoing progress in the research
for better treatments and a cure.
Randy Graise, a motivational speaker, will
present the ‘keynote’ address at the opening
session for the 2004 conference.
The pre-conference activities
now include a wellness fair on Thursday
morning. We’ll have live demonstrations
on First Aid, Clothing &
Fashion, Hearing Devices and Service
Dogs once an hour between 9 a.m.
and noon. More demonstrations will
be added, so keep an eye on the
website for updates.
To make sure everyone has a
chance to unwind, Friday’s dance
party has been extended two hours.
From 7-9 p.m., the music, lighting and
activities will be geared towards
children and families. At 9 p.m., the
singles and adults will have a chance
For more details, go to www.oif.org
to cut loose and leave rubber on the
dance floor.
We’ve added sessions, reduced
the number of lunch meetings, and
added exercise demos for Friday a.m.
Since the Adam’s Mark Hotel is
a high-rise building with three separate
towers, we’ve developed a
safety plan with hotel security— just
in case. Please take a few minutes to
review the emergency information in
the program book when you arrive.
For those who use mobility aids,
we’ll have special door tags. In the
event of an emergency, hotel staff and
security will give your rooms the
highest priority.
We also ask that everyone fill
out the emergency contact information
on the back of their nametags.
We have a couple of big surpises
in store for everyone at the awards
dinner and talent show on Saturday;
you won’t want to leave conference
early! For those not attending the
dinner, come by at 7:30 so you don’t
miss out!
One final reminder: for security
and safety considerations, nametags
will be required at all events. A
registration desk will be open in the
resource room if your party requires
additional badges.
MAKE new friends online in the OI Community chat room...
MEET new friends at the National Conference!
The OI Foundation Communications Director (and
webmaster) and your favorite chat room hosts will
host a chat and internet users’ social from 6-7 p.m.
Thursday, June 24. There is no agenda... this is just
an opportunity for everyone who’s made friends online
to “put a face to the chat alias” and chat in person!
The OI Foundation’s chat rooms are officially open
each Sunday evening from 8 to 10 p.m., except for
some holiday weekends as posted on the website
calendar and chat entry page.
For more information, check the chat page on
www.oif.org or write to webmaster@oif.org.
Breakthrough Spring 2004 Page 8

Article
Fdn president describes accomplishments in 2003
Jamie Kendall, President of the Board of Directors
for the OI Foundation, met with community members
last December at the Foundation’s annual membership
meeting, hosted by the Cincinnati-area Support
Group. Following are excerpts from her briefing to the
community about our accomplishments and goals.
Responding to questions
The OI Foundation support families by individually
answering every single question we receive. The foundation
is the premier provider of medically-verified resource
materials, created in response to the needs identified from
the community’s questions.
Web services
Two new webcasts— “OI Research Update” and
“Becoming a Paralympic Athlete” were added in the past
year, and are available in printed or audio format.
Virtually every resource the Foundation produces is
available online as a download or through the online store.
Information Resources
We completed a 9-year grant to participate in the NIH-
ORBD National Resource Center which helps to educate
people about bone disorders. We recently received a new
grant that will continue our participation in this center.
We completed a new guide to help nurses understand
how to care for people with OI, and an additional grant
enabled us to distribute this guide to more than 15,000
nurses and nurse educators throughout the country.
Nine fact sheets were developed, including: Planning
for Post-Surgical Care for Children with OI; Maintaining
Health During the Adult Years; Constipation;
Novel Forms of OI; OI and Osteoporsis; Pregnancy
Considerations for Women with OI; Obstetrical Considerations
for Women Without OI; Talking With Your
Primary Care Physician; and Talking With Your Orthopedic
Surgeon.
Outreach and publicity
OI was featured in a one-hour documentary “Children
of Glass,” which still airs frequently on the Discovery
Health Channel in the U.S. and in Canada. This program
generates many new inquries each time it runs. OI was
also featured on Dateline, and in local and community
papers throughout the country.
In the past year we conducted a milk carton campaign,
placing awareness adds on more than a million milk
cartons in the northeastern U.S..
Advocacy and Health Care
The OI Foundation supported the Rare Diseases Act
which provides authorization for the Office of Rare
Disorders at the National Institutes of Health (NIH),
increases the investment in orphan drug research, and
establishes regional centers of excellence for rare disorders.
We’re involved in developing the Surgeon General’s
Report on Bone Health, which will include a chapter on
OI.
Research
An annotated bibliography of OI research studies was
completed. This 66-page document serves as a resource
for doctors and researchers who want to learn about the
latest OI research.
Type I Scientific Meeting Continued from page 1
Clinical aspect
sessions ranged from
“What is mild OI and
where do we draw
the line?” to neurological
complications.
memorials Continued from page 13
Shaun Whitmore
John & Julette Santo, Jr.
The Santo Family
Ms. Gloria Scarce
Erich & Pamela
Shellenberger
Medical and other
treament discussions
began with “Lessons
Learned from Osteoporosis”
and
included multiple
Robert & Dianne Sherr
Mr. Marvin Shields
Rudolph & Lynette
Shields
Eugene & Margaret
Stevens
sessions on various
treatment strategies
and options.
The meeting was
sponsored by the
National Institute of
Reuben & Barb Stoltzfus
Mr. & Mrs. Carmine
Taglieri
Donald & Donna Tout
Domenick Rose &
Marlene Way
Arthritis and
Muscoloskeletal and
Skin Diseases, the
Office of Rare
Diseases, and the
Buchbinder family.
John & Ruth Whitmore
Richard & Patricia
WhitmoreJohn & Nina
Whitmore
Barry, Kelly, Jessica &
Chad Wiggins
Look for more
information in the
research section of
this newsletter, or
online at
www.oif.org.
Arthur & Elsie Wyandt
Peter & Sophie Zwolenik
Marcia Wilbur
Charles & Heidi Glauser
Maxine Willig
Nick & Wilma Voss
Page 9 Breakthrough Spring 2004

2004 Conference Information
Schedule is subject to change. For the
most up-to-date information, please see
the conference pages at www.oif.org.
Wednesday June 23
6:00 pm – 8:00 pm
Welcome Reception
Meet new friends and catch up with
old ones! Conference “veterans” will
be on hand to welcome new
attendees.
Thursday June 24
9:00 am – 7:00 pm
Registration Desk Open
9:00 am – 7:00 pm
Resource Room Open
9:00 am – 7:00 pm
Exhibits Open
9:00 am – 12:00 pm
Wellness Fair
Demos at 9:30 , 10:30, & 11:30 am
First Aid for OI Families
Clothing for Short-Stature
Getting the Most Out of Conference
Disaster Preparedness
Service Dog Demonstrations
More to come...
8:00 am – 10:00 pm
Support Group Leader Training
9:00 am – 10:00 am
Peer-to-Peer Group Leader Training
11:00 am – Noon Parent’s Open House
11:00 am – 4:00 pm
Camp OI: Childcare
11:30 am – 12:30 pm
OI: The Basics
1:00 pm – 3:00 pm
Opening Session
3:00 pm – 5:00 pm
President’s Reception
Sponsored in part by GM
6:00 pm – 7:00 pm
Cake and Coffee for
Chat and Internet Users
Schedule of Events
6:30 pm – 9:30 pm
Camp OI: Childcare
6:30 pm – 9:30 pm
Pre-Teen Game Night (8 and older)
7:00 – 9:00 pm
Peer-to-Peer Groups
Friday June 25
7:30 am – 8:10 am
Exercise Demonstrations
Water exercises
Wheelchair exercises
Yoga
8:00 am – 9:00 am
Breakfast
8:00 am – 7:00 pm
Exhibits Open
8:30 am – 12:30 pm
Camp OI: Childcare
9:00 am – 7:00 pm
Registration Open
Resource Room Open
9:00 am – 10:00 am
Sessions
10:30 am – 12:00 pm
Extended Sessions
12:30 pm – 1:30 pm
Talent Show Rehearsal
12:30 pm – 1:30 pm
OI Foundation Membership Meeting
1:00 pm – 6:00 pm
Camp OI: Childcare
1:30 pm – 2:30 pm
Sessions
3:00 pm – 4:00 pm
Sessions
4:30 pm – 5:30 pm
Sessions
6:30 pm – 9:30 pm
Camp OI: Childcare
7:00 pm – 9:00 pm
Peer-to-Peer Support Groups
7:00 pm – 9:00 pm
Family Dance
(Party favors & music for
Children & Teens)
9:00 pm – Midnight
Dance Party
Saturday June 26
8:00 am – 9:00 am
Breakfast
8:00 am – 5:30 pm
Exhibits Open
9:00 am – 4:00 pm
Registration Open
Resource Room Open
9:00 am – 10:00 am
Sessions
10:30 am – 11:30 am
Sessions
12:00 pm – 1:00 pm
Continuing the Home Adaptation
Conversation
Bring pictures of your on-going home
adaptation projects, or come to
discuss specific questions or problems
with your home adaptation projects.
12:00 pm – 1:00 pm
Fundraising Roundtable
12:00 pm – 1:00 pm
Talent Show Practice
1:00 pm – 2:00 pm
Sessions
2:30 pm – 3:30 pm
Closing Session
5:30 pm – 7:30 pm
Awards Dinner
Sponsored by Novartis
7:30 pm – 9:30 pm
Talent Show
Visit isit www.oif
.oif.or
.org
for up-to-date
conference
information.
Breakthrough Spring 2004 Page 10

2004 Conference Information
Break-out Sessions
Opening
Session:
Health Care
Moderate to
Severe OI
Mild OI
Finances
Teen
Sessions
“Designing
A Winning
Desitny”
Closing
Session:
“OI Research:
The Future is
Closer Than
You Think”
Surgery for
Children
Orthopedic
Management of
OI in the Era of
Bisphosphonates
Spinal Issues
Parent’s Role in a
Child’s Surgery
OI: The Basics
Pain Management
Ask The Doctors
How DNA is
Used in Modern
Medicine
Mental Health:
Pyschological
Adjustment
Hearing: Adults
Hearing:
Children
Othropedic
Concerns for
Adults
Medical
Treatments
Intervention
Strategies for
Infants
Intervention
Strategies for
Children
Managing
Moderate to
Severe OI in
Children
Managing
Moderate to
Severe OI in
Adults
Neurological
Complications
Respiratory
Issues
Managing Mild
OI in Children
and Adolescents
Managing Mild
OI in Adults
Fitness for
Adults
Social Security:
How it Can Work
For You
Keeping
Employment
Benefits
Family Finances:
Finding
Resources
Fundraising in
Your Community
Being Different
Dating and
Relationships
Fitness for Teens
Learning to Drive
Make-up
Techniques
Adapted
Athletics
The Mt. Everest
Expedition
For those interested in attending sessions
on a particular topic, look for these sessions
in the conference program !
Independent
Living
School Issues
Family Issues
Women’s Health
Dental Issues
Peer-to-Peer
Sessions
Home
Adaptations
Independent
Living
School Choices
(Panel)
Issues in Public
Schools
Adoption
Focus on the Rest
of the Family
Parenting the
Child with OI
GYN Issues and
Menopause
Pregnancy
Body Mechanics
for Parents
Break-out and Peer-to-Peer Sessions are subject to change.
See website and/or conference program for complete listings and descriptions.
Dental Issues for
People with OI
Orthodontia
Parents w/OI
Grandparents
Home Schoolers
Fathers
Teens
Preschool Parents
Schoolage Parents
Teen Parents
Type 1 Adults
40+ Adults
Spouses
Don’t want to bring your scooter or power chair with you, but are
worried about mobility issues at conference?
Visit www.scootaround.com/rentals/oif for details on how to rent
a scooter or power chair while in Dallas.
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.
Page 11 Breakthrough Spring 2004

Spotlight
Med resident bridges gap between living with and treating OI
Amy Jackson, a family practice medical resident in
Florida, recently took part in the OI Foundation’s fourth
scientific meeting, “Mild Forms of OI: Molecular Basis,
Natural History and Treatment.”
She opened the meeting by describing how OI affects
her daily life, giving the researchers a first-hand account of
what she refers to as the “hidden form of OI.”
“I don’t look like I have OI,” Amy explained. “So a lot
of people don’t think it’s a part of my daily life.”
She suffers from frequent back pain and occasionally
uses a cane, but many people forget she has OI when they
see her handle daily
activities.
“Since it’s not readily
apparent, it’s harder to
explain,” she said.
“People will ask me to
run, or lift or carry
things, join in on sports
teams...”
Amy was diagnosed
at seven months, after her parents faced allegations of
child abuse. Against the advice of her pediatrician, her
parents encouraged her to take risks and explore her
limits.
“I tried to play soccer two seasons in a row,” she said,
“and both years I broke a bone during the first practice!”
She does swim, and credits that exercise with helping
increase her strength and prevent fractures. She also
played softball, catching and batting, but using a pinch
runner.
Today she’s beginning to experience hearing loss, and
had to quit Spanish lessons due to her hearing difficulty.
She’s worried about her scoliosis worsening, about
obtaining insurance, and she plans to adopt children rather
than risk a pregnancy.
She recently spent several days in bed with back pain,
after having to perform cardio-pulmonary respiration
(CPR) on a patient.
“It’s really a part of my daily life. The back pain, worrying
about breaks, worrying about slippry surfaces, icy
sidewalks, curbs, stairs, having to turn down offers to play
sports or participate in physical activities...”
“But you can’t dwell on those things. You have to
appreciate what you can do, make the most of it, and
adapt.”
“I know it’s much worse for those with more severe
OI,” she said. “I guess it affects me on a more social basis
than it does physically.”
Executive Director Heller An Shapiro invited Amy to
attend the scientific meeting for precisely that reason.
“I think a lot of the doctors and researchers have more
experience dealing with the more severe forms of OI,”
Amy said.
“Sharing my experiences kind of set the tone for the
meeting. It reminded everyone what people with milder OI
face, as well.”
Amy has been involved in OI Foundation activities for
about four years. She
said she was very
pleased when she
received the call from
Heller An asking her to
join the scientific
meeting.
“It was really
interesting. I hadn’t
really interacted with the doctors and researchers before
as anything other than a patient.”
At this meeting, Amy filled the roles of “patient, presenter,
and fellow medical professional.”
“It was so great to be there,” she said. “People with mild
OI are so excited about this meeting– it seemed like OI
research was always about the more severe forms of OI.”
One of the lessons Amy learned at the meeting was how
integrated the research efforts are, and the fact that OI
research in any form is going to benefit the entire community.
“But more than anything I realized that we still have
more questions than answers about OI,” she said. “We
have a lot more to learn.”
She believes the Foundation’s increased emphasis on
research is going to benefit the entire community, and plans
to pay more attention to the research efforts in the future.
“But I’m not leaving family practice,” she said. “Not for
research, surgery, or even orthopedics.”
She also does not plan to specialize in OI, though she
hopes to someday have patients with the disorder.
“ My experiences as a patient with OI will make me a
better doctor,” she explained. “Just knowing– from a
patient’s perspective– what can and can’t be done can
make a difference.”
One of the lessons Amy learned at the meeting
was how integrated all the research efforts are,
and the fact that OI research in any form is
going to benefit the entire community.
Breakthrough Spring 2004 Page 12

Honorary & Memorial Donations
In Honor of...
Michael & Ellen
Bendel-Stenzel
Bonnie Landrum &
Michael Johnston
Bob & Sally Couser
Bonnie Landrum &
Michael Johnston
Jay & Judy Easley
Sather Fin. Group, Inc.
Peter Elmore
Ms. Barbara Joynes
John & Mary
Fangman
Bonnie Landrum &
Michael Johnston
Bruce & Karen
Ferrara & Family
Bonnie Landrum &
Michael Johnston
Jessica Finkel
David & Susan
McRoberts
John & Barbara Seegal
January 1 to March 31, , 2004
Cathy Fritz
Mrs. Viola Krominaker
David Brasel & Andrew
Heukebo
Bonnie Landrum &
Michael Johnston
Ron & Claudia Hoekstra
Bonnie Landrum &
Michael Johnston
Nicole Hofhine
Mr. Adlin DeCardi
Mallie Holman
Jay & Jill Armand
Mr. & Mrs. W. Holman, III
Greg & Leigh Holman
Dr. & Mrs. W. Holman, Jr.
Mr. & Mrs. Michael
Kellough & Family
Carl & Mary Martin
Lewis & Barbara
Masters, Jr.
Lewis & Frances
Masters, Sr.
Scott & Julia Moore
Robert & Amy Straight, Jr.
Mark & Erin Tillman
Ethan Holub
Ms. Tonya Oetken
Ginny & Steve Hustead
& Family
Bonnie Landrum &
Michael Johnston
Jeans For Generosity
Mrs. Valerie Dechene
Staff & Teachers at
Brittonkill Central School
Diane Camp & Paul
Leutgeb
Bonnie Landrum &
Michael Johnston
Roy & Jeanne Maynard
& Family
Bonnie Landrum &
Michael Johnston
Leo & Jeanne Mrozek &
Family
Bonnie Landrum &
Michael Johnston
Andre & Elaine Nelson
Bonnie Landrum &
Michael Johnston
The Nemeroff Family
James & Stacey Yavorski
Miss Cayley Erin Olsen
Ms. Margaret Kelly
Steven & Maureen Olsen
Rob & Shauna Payne &
Family
Bonnie Landrum &
Michael Johnston
Mark Peck
Grand Rapids-NAIFA
Michele & Paul Rak
A. Maxim & Mary Pallasch
Mr. Martin Sagan
Paul & Michelle Rak
(Birthday)
John & Kathleen O’donnell
Jonathan Reed
Anthony & Patricia
DePalma
Nicole Schettler
Clyde & Pat Weisbrod
Joey Shine
Kathy & Dan Shine
The Kindergarten
Teachers For
Christmas
Oakdale Elem. Sch.
Dave & Kathy Teufert
& Family
Bonnie Landrum &
Michael Johnston
Kay West
Ms. Gayle Warren
Teresa Winn
McCormick & Co., Inc.
Addie Wisniewski
Ms. Jenny Holz
Julius & Dorothy
Zimmerman
Michael & Caren
Loguercio
In Memory of...
Frank Bernstein
Mr. & Mrs. Charles
Gojer
Megan J. Blackwood
Mr. & Mrs. Charles
Blackwood
Frank Busichio
Ms. Rosemarie Kasper
Peter C. Cappello
Ms. Norrine Straw
Kathi Gadula
Ms. Joanna Aiello
Robert & Mary Bennett
Ms. Linda Boni
Ms. Arlene Burke
Stanley & Ann Czarnik
Glenn & Bernadett
Kaiser
Ms. Renee Mikolajski
Anthony & Marilyn
Rutkowski
Timothy & Margaret
Trublowski
Thomas G. Hand
Mrs. Gladys Strauch
John C. Harris
Mr. & Mrs. Wilbur Harris
John T. Hightower
Bonnie Landrum &
Michael Johnston
Bill & Corinne Landrum
Michael Houlihan
Bonnie Landrum &
Michael Johnston
Robert F. Hughes
Ms. Susan Stackhouse
Alexander Julian
(A.J.) Koutoulas
Mrs. Jennifer Koutoulas
Christine A. Kowbel
Ms. Linda Andry
Mr. Roland Benzow &
Glenna
Mr. & Mrs. Allan Bley
Charles & Holly Brown
Ms. Ruthann Cresswell
Ms. Rose Esaian
Thomas & Dorothy
Feeney
Mrs. Michelle Fritsch
Mr. & Mrs. Frederick
Ganaway
Ms. Lora Hildebrandt
Thomas & Leah Hinze
Mrs. Bonnie Hollis
Robert & Rachel Keller
Kaplan
Vondell Kis
Mrs. Gloria Kowbel
Mr. John Kowbel
Mr. & Mrs. J. Richard
Krembs
Ms. Sally Landish
Landmark Title Of Racine
John, Karen & Katie Lee
Ms. Sandra Linskens
Nicholas & Mary Jo
Maheras
The Maheras Family
Steven & Diane Mekeel
Ms. Mary Morones
Rey & Marilyn Perala
Timothy & Stacy Perrelle
Mrs. Peggy Robbins
Mr. & Mrs. James
Spangenberg
Mr. & Mrs. Walter
Stenavich
John & Barbara Suprak
Mr. & Mrs. Gregory Taleck
L. Pete & Gail Toler
Mr. Tony Totero
Ms. Marian Tykal
Donald & Eileen Voss
Walden III
Mr. & Mrs. Dale Weber
Perry & Marlene
Wieczorek
Ms. Charlotte Wieczorek
James Wieczorek &
Debra Beadle
Words Of Faith Family Ch.
Mr. Darryl Worley
Charles & Deborah Yale
Connor Laughlin
Bonnie Landrum &
Michael Johnston
Hannah Lehwald
Ms. Carmelina Citino
Richard & Gayle Juliano
Ginny & Sean Sturgill
Ralph & Julia Wisniewski
Taylor Wisniewski
Amos Monez-Grant
Annette Haberman
Leah Merkwan
Mrs. Barbara Schroeder
& IFSP Team
Carol Sheldon
Patty Stuelpnagel
Martha Newmark
Mr. & Mrs. David Rosen
Robert J. Roubik
Altimate Builders, Inc.
Bayside Middle School
Jason & Rachel
Blemenfeld
Ms. Stacy Fiorentino
William & Brenda Gleason
Ms. Jill McCarrier
Piper Melkonian
Lawrence & Katherine
Nowakowski
Ms. Linda Settler
Stormonth School
Ms. Roberta Teitelbaum
Mr. Michael Watton
Michelle Sarkisian
Warren & Margaret
Damiano
Tarah Schaeffer
Ms. Emily Kingsley
F.M. Scherer
Richard & Doris Roth
Michael Shultz
Michael & Nancy Marotta
Edmond Somekh
Ms. Odille Hansen
Moshi Somekh
Ms. Odille Hansen
Grace Twoie
Sonnenborn
Donn & Mary Anne Davis
Matthew Strecker
Mrs. Lorraine Dellasanta
John R. Syssa
Ms. Norrine Straw
Baylee Taylor
Archie & Cindy Walker
Mary Terhune
Ms. Rosemarie Kasper
Richard Wanzer
Mr. & Mrs. Walter Riddle
William Larry Warren
Feagan & Foster
Ms. Joan Nash
Edward & Paige Pinnix
Polk County N.C.A.E.
Shaun Whitmore
David & Nancy Babcock
Mr. Michael Baker
Ms. Cynthia Beyer
Jere & Isa Breneisen
Ms. Judith Cook
Crusaders Youth
Activities Association
Ms. Rosemary Derr
Glenn & Robin Eanes
Ms. Linda Eckenrode
Pia, Mitchell & William
Fenimore
James & Jackie Foley
Mr. James Fox
Wendy & Kyle Freimuth
Robert & Linda Freisher
Nickiforos & Ruth
Grigoriades
J.C. & Carole Hale
Roger & Mary Jo
Henderson
John & Ruth Hill
Fred & Jane
Huehnergarth
Mrs. Kathleen Knapp
Mr. Melvin Martz, Jr.
Thomas & Tina Martzall
Frank & Sandra Mileto
David & Barbara Mimm
Simon & Patricia Minsker
Ms. Jennie Moran
Ms. Elizabeth Morrow
Mr. & Mrs. Albert
Muehleisen
Rudy & Carol Oleksa
Ms. Elizabeth Plastino
Brian & Lucille Pope
Poseidon Enterprises
Charlotte, Inc.
John & Cynthia Rathvon
Realty Settlement
Services, Inc.
Resurrection Catholic
Athletic Assoc.
Resurrection Catholic
School Faculty
David & Christine Rosser
Curtis & Sandra Ruhl
Ms. Betty Ruhl
Mrs. Tracy Ryan
Continued, page 9
Page 13 Breakthrough Spring 2004

Article
Fashion flair: dress for success regardless of stature
by Neeru Sharma
OI Fdn Board Member
Having OI presents plenty of
challenges. One of them which many
of us deal with on a daily basis but
rarely discuss in detail is clothingrelated
issues. Finding age appropriate
and easy to wear items is important
for a person’s well being and
image.
Many of you may be able to recall
instances when you have had a need
for a certain kind of outfit and have
been frustrated in finding something
that works for your unique body.
Following are some tips based on
years of experience (and credit card
bills!) which I hope will begin to add
some fashion flair to your daily
wardrobe. In addition, at the upcoming
conference in Dallas, we will have
a booth at the wellness fair dedicated
to this topic.
So please collect your favorite tips,
list of stores, or special techniques
you use that will benefit your fellow
OI friends in the quest of looking
good and feeling great, and stop by
the booth at the wellness fair!
Petite Sizes
Many stores carry petite sizes
which thankfully now have adult
styling and fashion flair. Unlike twenty
years ago when small size meant
childish designs, you can now find a
variety of beautiful and sexy clothing.
Some of the best places to find
reasonably priced items include:
Limited Too and The Limited
Victoria’s Secret (catalog)
Land’s End (catalog)
Marshall Fields or Dillards (petites)
Lord and Taylor (petites)
Petite Sophisticate
Abercrombie &
Fitch
Nordstrom’s
The GAP
Old Navy
Banana Republic
Ann Taylor Loft
The great thing
about finding clothes
from these department
or catalog
retailers is that if
something does not
fit, it is not difficult
to return items.
Extra room is important
The best thing to do is to buy
clothes that leave a little extra room
around your arms and legs so if you
are transferring out of your wheelchair
or use crutches/canes you still can
easily move.
You don’t want to hide your physical
imperfections, but you can use
clothes to enhance the parts of you
that you would like people to focus
on. I figure since I am short I might
as well wear clothes that allow me to
appear a little taller - so tops and
pants that coordinate are key.
Make your clothes accessible
Another item to remember is to buy
clothes that have easy snaps/buttons
and zippers. No need to struggle and
break a bone getting your clothing on
or off! Velcro is a great alternative.
In those instances where clothes
just don’t fit well for you off the rack,
you may want to consider learning to
hem, sew or finding a suitable tailor.
Many times because of the body
Neeru Sharma will offer fashion tips and recommended
resources at the Health Fair at the 2004 Conference in Dallas.
shapes many of us with OI have, no
clothing from stores will ever quite be
perfect. The key is to make your
clothes look right for you.
Accessorize!
Finally, shoes and accessories are
important to pull together a polished
look. Finding shoes at major department
stores can be a pain, but I have
noticed stores like Nordstrom’s,
Payless, Land’s End and Marshall
Fields carry many styles which are
smaller but look professional.
Bags/purses and other carrying
items should match your chair or outfit
and be easy to handle. Having too
many bags or not enough storage can
be a hindrance to being independent
and stylish.
Hopefully this has helped you on
your journey into the world of dressing
well and feeling great. For me it is
an ongoing adventure which makes
me relish the days when I receive my
home delivered catalogs.
Breakthrough Spring 2004 Page 14

Cornerstones
Surgery slows- but won’t stop- college student
by Brett L. Eisenberg
OI Community Member
This past year for me has been a
year filled with so many emotions:
shock, confusion, sadness, happiness,
relief, and pride, just to name a few.
It all started around last September.
I was starting another year of college.
I had the usual emotions of eagerness
and nervousness. I was looking
forward to another year of getting
good grades and moving towards my
goal of having a degree.
The semester started
normally, and I was putting
in long days at school and
coming home and doing
lots of studying and work.
Something, however,
was a little different this
year. The difference was
in my back. I was quickly
noticing that I was having
more and more back pain. At first I
wasn’t really alarmed. It was normal
for me to have back pain. I knew I
had scoliosis, which is what was
causing it. However I soon realized
that I couldn’t go on with this pain any
more and I was in more and more
discomfort. Because of this I eventually
found myself having to sleep
sitting up and sometimes on the
reclining chair in the living room.
After the pain got worse I told my
dad that I needed to go to my back
doctor for a checkup. I thought
maybe he could just give me some
pain killers or muscle relaxants and
the pain would go away. What
happened next was a shock. The
doctor informed me that my scoliosis
curves had gone from being about
thirty-seven degrees to about seventy-eight
degrees. As though this
news wasn’t shocking enough, my
pulmonary function had gone from
near normal to less then fifty percent.
He quickly informed my parents and I
that I had no time to waste and that I
would have to have my entire spine
fused from the front and the back.
My parents and I understood the
importance of the surgery. I quickly
contacted the OI Foundation, where
they gave me several options. We
choose to see Dr. Jay Shapiro, head
“I had so many things I wanted to
accomplish, I didn’t want my recovery to
hold me down. My own personal goal
was to be well enough by the end of the
summer to be able to lead a normal life.
I accomplised that goal.”
of the OI Clinic at Kennedy Krieger
and scoliosis expert Dr. Paul
Sponseller. They said that they would
be able to correct the scoliosis and
that I would be able to return to a
normal life once recovered.
After wrestling with the idea in my
mind for a little bit I agreed to have
the surgery done this past February,
meaning I would miss an entire year
of college, which broke my heart.
The surgery took place in two parts,
and because of complications I stayed
in the hospital for exactly one month.
However, the main question in my
mind was, “was this surgery worth
it?”
The answer was an obvious yes.
My scoliosis went from the seventyeight
degree angle to eighteen.
As I recovered I quickly realized
that my back pain was gone and
some other health issues had also
disappeared.
However, with OI, no recovery is
easy— and this one was no different.
It was not only hard to learn how to
use my new body, but I was having
major stomach issues due to all the
medications I was taking for the pain.
These issues lasted for months and
my improvements physically were
very slow.
I had so many things that I wanted
to accomplish, I didn’t want
to let my recovery hold me
down. My own personal
goal was to be well enough
by the end of the summer to
be able to lead a normal life.
I accomplished that goal
with sheer determination. I
knew it was important for
me to keep my mind busy
and get back to life. So
four months after my surgery and
while completing rehab, I signed up
for online classes.
I began to feel new emotions by
July. These emotions were of enormous
pride and eagerness looking
ahead at the future. My health is
improving every single day. I am able
to walk with a walker for now, and
my lungs are actually improving from
what they were before my surgery.
I decided to write this article in
hopes that someone with OI would
read this and be able to see that no
matter what crisis arises, you can
overcome it. Its not easy, but OI is
only a part of our lives and it should
never get in the way of what our
dreams and hopes are for the future.
Thank you to my doctors, family,
and friends for helping me keep my
dreams alive.
Page 15 Breakthrough Spring 2004

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