In this issue... Remembering the OIF this Holiday SeasonNotes from the OI FoundationFrom the OIF Information CenterOIF Good Stuff Sweepstakes - LAST CALL
Dear Friend,
As we near
the end of 2017, we are pleased to present you with an update on our programs
and activities as well as thank you for your continued support of the OI
Foundation. Because of your generous support, we are able to continue providing
programs and services that benefit all members of the OI community. Thank you!
If you haven’t had the chance to remember us with a gift at this time of year,
please take a minute to visit www.oif.org
to make your gift. Thank you for your support; we hope 2018 is a
wonderful year for you and your family!
The Board
of Directors and Staff of the OI Foundation
P.S.
Remember to check if your company matches charitable giving! You can find more
information at www.matchinggifts.com/oif
Research Grants—
The OIF continued funding the research of three young investigators: Dr. Ronit
Marom of Baylor College of Medicine, Dr. Kyung-Eun Lim of Indiana University
School of Medicine, and Dr. Ivan Duran Jimenez of UCLA David Geffen School of
Medicine.
The OI Foundation continued to support, through the Jamie
Kendall Fund, a pulmonary study at Hospital for Special Surgery led by Dr.
Cathleen Raggio. This community directed, scientific committee led study is in direct response to the growing concern of pulmonary complications in the OI community, especially in adults. It will work to determine the inherent cause
of restrictive physiology (cardiopulmonary insufficiency) in people with OI so
that treatments can be recommended and appropriate measurements for an accurate
assessment of the restrictive physiology in OI patients can be defined by
creating a standard normative reference for each OI type.
NIH Brittle Bone
Disorders Consortium (BBDC) — Now in its fourth year, the BBDC has made
significant progress in achieving its goals. There are now 14 Clinical Research
Sites (doubled since 2016) working together to collaborate on exciting new
research. To date, the BBDC is involved in seven studies including a pregnancy
study, an early stage drug therapy study, a scoliosis study, a biomarkers
study, a quality of life study, a dental study, and a craniofacial study. The
OIF is working very hard to continue funding this project to ensure this pace
of research is maintained.
Additionally, the OIF is funding the research participation
of the Hospital for Special Surgery and the Shriners Hospital for Children-
Tampa in the Brittle Bone Disorders Consortium (BBDC).
National and Regional
Conferences— The Uniting Unbreakable Spirits Regional Conference
Program, an effort to bring information and resources to more members of the OI
community, hosted meetings in Houston, Texas; Montreal, Canada; and Seattle,
Washington in 2017. In the New Year, the OI Foundation is excited about the
2018 OIF National Conference being held in Baltimore, Maryland in July, as well
as a return to the west coast for a 2nd Regional Conference in Los
Angeles, California in November 2018.
Click here to read the full update on OIF programs and activities.
Notes from the OI Foundation
Jeanie Coleman Impact Grant Program - Applications Available January 2nd!
Impact Grant applications will become available on January 2,
2018. The Children’s Brittle Bone Foundation and OI Foundation administer
Impact Grants to provide direct support to individuals and families with
products or services that will greatly improve their quality of life. Items
that have been awarded in the past include wheelchairs, orthotics, hearing
aids, and modified vans, among many other amazing items. As a reminder,
applications will not be available until January 2 and the deadline for
submitting applications is February 12. If you have any questions, please email
impactgrants@oif.org.
Fall 2017 Breakthrough Newsletter
Have you had a chance to read the latest issue of Breakthrough? The recently redesigned newsletter features:
-OIF National Conference -Good Stuff Sweepstakes -OI International Scientific Meeting -an update from OIF CEO Tracy Hart -OI Clinic Spotlights -Research Corner and MORE!
Click here to download this issue of Breakthrough!

From the OIF Information Center
Tips for
Participating in Clinical Research Studies on OI
Supporting research is an important part of the OI Foundation’s mission. Often,
the success of clinical studies of a rare disorder like osteogenesis imperfecta
depends on getting enough people to participate in the study so the results are
meaningful. People who are interested in participating in a clinical trial are
encouraged to review the OIF fact sheet “What You Need to Know about
Clinical Studies.”
Additional information about the types and phases of clinical research studies
can be found on the National Institutes of Health (NIH) website at www.nih.gov/health-information/nih-clinical-research-trials-you/basics. Learn more about research opportunities through the Brittle Bone Disorders Consortium (BBDC) and Contact Registry
at this site: https://www.rarediseasesnetwork.org/cms/BBD.
Two New Podcast
Episodes Available on Physical Therapy, Protective Handling, and Home Exercise
Routines
Dr. Frances Baratta-Ziska, Physical Therapy Clinical
Supervisor at the Hospital for Special Surgery in New York, joined the OIF on
two podcasts to discuss physical therapy strategies in children and adults. Dr.
Baratta-Ziska answered questions on a wide range of topics, from strategies to
adapt a classroom setting for a child with OI to recommendations on
incorporating elements of physical therapy into home exercise programs and
daily routines.
To listen to these
episodes and any other episodes of the OIF Podcast series, please visit www.oif.org/OIFpodcast. Additional information about safe-handling and
self-care physical therapy and occupational therapy strategies for osteogenesis
imperfecta is available in the newly revised OIF publication: Physical and
Occupational Therapists- Guide to Treating Osteogenesis Imperfecta. Click here for the PDF version
of the guide. If you have any questions or would like a printed copy of the
guide, please feel free to contact the OI Foundation at (301) 947-0083 or bonelink@oif.org.
Get
Connected to the Unbreakable Spirit® Community through Online OI Support Forums
Over the past several years, social media and online networking have increased connections in the
Unbreakable Spirit® community. The OI Foundation encourages mutual support and shared experiences through all mediums: in-person support groups,
meet-and-greet social mixers, family conferences and online interactive forums.
Online forums and social media are often the most convenient way for people living with a rare and complex disorder like
OI to connect with others about specific and personal topics. The OI Foundation
maintains a list of online OI-related support forums at this link www.oif.org/OnlineOISupport.
Whether you are looking to connect with Spanish-speaking OI community members,
or about a special topic such as chronic pain, this list may have the forum you
are looking for. If you moderate or participate in a group that you would like
added to this page, please email Bonelink@oif.org. Also, keep up with day-to-day activities and
announcements through the official OIF Facebook
and Twitter Pages!
Last Chance to Enter! OIF Good Stuff Sweepstakes

Participants of the Good Stuff Sweepstakes have a chance to
win one of three amazing prizes:
- Make your home
a “smart home” with the Amazon Echo and TP-Link Smart Home Starter Kit.
The TP-Link Starter Kit includes a light switch, light bulb and outlet. Not
only will you be able to schedule when your lights turn on and off from your
phone, but you can use your voice to ask Amazon Echo’s Alexa to adjust
them for you. Alexa works with TP-Link and several other brands that will allow
you to fill your home with products that will keep your house safe, energy
proficient and accessible just by talking.
- Celebrate the
holiday season with a $500 Visa Gift Card. Your Visa Gift Card can be
used anywhere that Visa debit and credit cards are accepted.
- A Trip for Four to the OI Foundation's
Biennial National Conference in Baltimore, Maryland on July 13-15, 2018.
The OIF National Conference is the premier educational and social experience
for families and individuals living with osteogenesis imperfecta. To learn more
about the conference program please click here.
Winner will receive four (4) full registrations to the conference as well as a
hotel room for two (2) nights at the conference hotel, the Renaissance
Baltimore Harborplace Hotel.
To enter the OIF Good Stuff Sweepstakes, visit www.oif.org/sweepstakes. All entries must be received by January 12, 2018.
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