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In Depth Tutorials and Information
commitment. It is a creative effort based on sharing
knowledge, learning and building consensus. Team
members may bring different sets of skills and points of
view to the task, but all are working toward the same
end. It has been shown that in times of scarce resources,
groups that work collaboratively obtain more of those
resources and have more success.
The OI Foundation is an active partner in medical
research. It encourages collaboration through its sci-
entific meetings and think-tank gatherings. The free
exchange of data and creative thinking that these meet-
ings stimulate encourages the scientist and the clini-
cian to look at data from new perspectives, to ask new
questions and to recognize new research worthy topics.
Convening meetings, which bring together some of the
best people in basic science and clinical care, increases
the opportunities for forming new alliances and speed-
ing up the pace of discoveries. Work in cell biology that
led to the discovery of recessive forms of OI benefited
from OI Foundation scientific meetings and research
grants. Meetings that identified the paucity of informa-
tion on non-skeletal issues reported in OI led to new
studies and new approaches to existing murine studies.
An advocate is someone who argues from a particu-
lar point of view. The OI Foundation is an advocate not
only for the social, emotional, civil rights and medical
needs of people who have OI, but also an advocate for
expanding understanding about the causes and conse-
quences of this rare, genetic disorder. It is an advocate
for improved treatments; not just in specialty medi-
cal centers but in every community across the country.
And through its connections with other rare disease
organizations in the United States plus OI Associations
around the world, it is in a position to be part of wider
advocacy efforts.
An important part of the Foundation's advocacy
work is its efforts to lobby Congress for increased fund-
ing for medical research on OI relevant topics. At a
time when there are multiple competing demands for
scarce funds, effective lobbying becomes a critically
important activity. In addition, the OI Foundation has
been an active partner in helping move research for-
ward by raising funds for seed grants and postdoctoral
fellowships.
The Foundation is also an advocate for people who
have OI. Through its contacts with parents, youth and
adults who have OI, the OI Foundation is able to articu-
late their health concerns, questions and priorities. By
establishing a hierarchy of research questions and pri-
orities, the OI Foundation influences decisions about
research worthy topics.
Communication is an essential element of every
successful team effort and every successful organiza-
tion. From the days of the first typed newsletter, an
important part of the work of the OI Foundation has
been to disseminate information - information about
practical problem-solving, best practices in treatment
and research findings. Today, through social media,
the Foundation's website, email, support groups and
countless contacts with parents, youth and adults who
have OI, the OI Foundation is able to identify the con-
cerns and priorities of the OI community. Through
its Medical Advisory Council, contacts with medi-
cal specialists, primary care providers, basic scientists
and clinical researchers, the OI Foundation is able to
learn about latest findings. Serving as a conduit, the
OI Foundation is able to share the concerns of the OI
community with the medical research community, and
report on scientific findings in language that is acces-
sible to everyone.
With a database of over 30,000 people with OI
and those who care about people with OI, the OI
Foundation is able to communicate on a regular basis
with constituents about the latest research, scientific
meeting outcomes and possible clinical trial participa-
tion. Newsletter and website articles share the OI com-
munity's stories of inspiration, hope and celebrations of
the successes of those living with OI.
Social networking sites and other communication
vehicles can facilitate discussion on new treatments
including pharmacological as well as surgical from
the perspective people in the OI community. Parents
of children with OI, youth and adults with OI are
adept at using the Internet. A critical remark on a site
like Facebook about a specific program can often start
a firestorm of “me too” comments or in many cases a
“you're wrong” string of exchanges. A simple question
related to nutrition or exercise, for example, will, in
many cases, lead to hundreds of responses from people
with OI and/or loved ones and parents about their per-
sonal experience. Sometimes it is a way for the poster to
“vent” but for the most part people posting on sites that
are disorder specific want to share their personal expe-
rience with the hope that it will help someone else. It is
in its truest form patient advocacy and open communi-
cation, but the impact of this collection of comments is
potentially greater when organized and analyzed.
Because it has access to many sources of informa-
tion the OI Foundation is often able to detect trends. For
instance, the Foundation noted comments from adults
who have OI about difficulty finding a doctor outside
of a children's hospital who had some experience treat-
ing a person with OI. Adults with OI were also asking
questions about other medical issues they were hav-
ing such as asthma, sleep apnea and glaucoma. They
wondered if these problems were just part of aging or if
they were connected to their OI. There was little infor-
mation about these and other issues including cardiac,
respiratory, gastric and kidney issues. This awareness
led the OI Foundation to make improving access to care
