March 2015 E-News
Mark your Calendars!
National Osteogenesis Imperfecta Awareness Week - May 2-9, 2015!
Imperfecta Awareness Week is a time to share your Unbreakable Spirit® and
educate others about osteogenesis imperfecta.
Get involved in OI
Awareness Week 2015! Hang posters, request a state proclamation, or hold a
fundraising event (Blue Jeans for Better Bones Day, Bone China Tea) at
school, at work or in your community. Be sure to share and retweet
#SHAREforAWARENESS posts - we can’t wait to see how many people we can reach
through social media this year!
Kick off National OI
Awareness Week with Bone
China Tea 2015! Bone China Tea is a great way to raise
awareness and support the OI Foundation without holding a live event. Invite
your friends and family to enjoy a cup of tea in the comfort of their own
home, and donate the money they saved by not attending a live event! To get
started, visit www.oif.org/BoneChinaTea2015.
Please contact DCymber@oif.org if you
have any questions.
OI Awareness Blue Jeans for Better Bones Day will be on Friday, May 8, 2015. For
more information or to start planning your Blue Jeans for Better Bones Day,
Accept the 50,000
Laps – One Unbreakable Spirit® Challenge and make a wave in your community
Commit to swimming any number of
laps in the month of May 2015 to help us reach our goal of collectively
swimming 50,000 laps – to represent the 50,000 people with OI in the United
States. Signing up is easy! Visit www.oif.org/50000Laps
and register as an individual swimmer or start a team to invite friends and
family to join you. Once you have registered, you will get a personal page.
Here, you will announce the number of laps you plan on swimming along with
creating a personal fundraising goal. Share this page with your family,
friends, co-workers, neighbors and social media followers to help spread
awareness about osteogenesis imperfecta.
With its low impact and
high muscle involvement, swimming is a wonderful way to exercise your mind,
body and Unbreakable Spirit®!
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From the OI Foundation
Wines, Strong Bones 2015
On Saturday, February 28th, the OI
Foundation held the 15th Annual Fine Wines, Strong Bones benefit at the Gaylord
National Hotel in Washington, DC’s National Harbor. A record-setting
275 people attended this annual fundraising event and spent the evening
playing casino games, tasting delicious food and wine from around the world,
bidding on over 100 auction items and participating in the Fund-the-Mission
portion of the live auction. By the end of the night, over $100,000 had
been raised to help the OI Foundation continue its support of the OI
you to all of the evening’s attendees and a special thanks to event sponsors:
Kennedy Krieger Institute, Smith & Nephew, The Mitchell and Louis Shulman
Charitable Foundation, Greenberg Traurig, Veris Consulting, Evensky &
Katz/Folds Financial and Trilogy Federal.
Wines, Strong Bones could not be held without the help and support of its
Planning Committee members: Gayle & Roger Bache, Vivianne Couts, Tim
Dombro & Jamie Kendall, Jeffrey Eslinger, Bill McNutt, Mary McNutt, Kyle
& Tracy Mulroy, Lisa Parman, Suzanne Richard, and Allison & Lawrence
see more than 150 pictures, click
you planning to attend one of the 2015 OIF Regional Conferences?
Register now for the OI Foundation’s
Regional Conference in Stamford, Connecticut! This meeting will be held at
the Sheraton Stamford Hotel on Saturday, May 16th. During this one-day
OI education program, our goal is to unite unbreakable spirits from the
Northeast region of the US to learn more about managing osteogenesis
imperfecta in children and adults. Session topics include Understanding OI, Research Update,
Managing OI- Bones, Scoliosis, and the Spine (for Parents), Mental Health and
OI (for Adults), Managing OI- More than Bones (for Parents), Managing OI-
Bones and Beyond Multidisciplinary Approach (for Adults), Raising a Resilient
and Healthy Family (for Parents), Advocating for Yourself and the “Life with OI” Panel Series on
Physical Activity. The one-day meeting will also have open
social opportunities for children, parents, and adults during the lunch break
and the social reception at the end of the day. Children 12 and under are
free to attend, but must be registered online.
the date for the OI Foundation’s Regional Conference in Minneapolis,
Minnesota! This meeting will be held at the Doubletree Bloomington on
Saturday, September 12th. More information, such as agenda
and speakers, will be coming soon.
Regional Conference website for registration information and
conference details. Online registration for the Northeast Regional
Conference in Stamford, CT closes on Monday, May 4, 2015. Mark your
calendars, spread the word and register today for these dynamic and
OIF Information Center
Vilissa Thompson, a social worker, an advocate for people with disabilities
and a woman with OI, is compiling an anthology of essays, songs, poetry,
short stories and artwork that captures the experience of people living
with disabilities. The theme of the anthology will be abilities and
personhood. Ms. Thompson feels that there is a serious lack of books and
stories that portray people with disabilities in a fair and honest manner.
She would like you to join her in being part of the solution. For details
about this ambitious project, visit her website http://rampyourvoice.com/the-iamable-anthology
or write to Ramp Your Voice!, P.O. Box 1286, Winnsboro, SC 29180.
Abilities Expo is a commercial enterprise that hosts informative workshops
and exhibit halls for the community of people with disabilities, their
families, caregivers, seniors, and healthcare professionals. The
exhibit halls are FREE to attend and have a wide range of products and
services- from personal care items to accessible vehicles. The Expo
travels to several cities throughout the year. The Spring-Summer 2015
schedule includes New York City/Metro (May 1-3), Chicago (June12-14) and
Houston, TX (July 31-August 2). Visit their website www.abilities.com
to learn more.
book, Just One of the
Kids: Raising a Resilient Family When One of Your Children has a Physical
Disability, was mentioned by parents at the OI Foundation
Regional Conference in Los Angeles. Written by Kay Kriegsman, PhD, and Sara
Palmer, PhD, the book uses stories from dozens of families to illustrate
practical and helpful approaches to raising children. Many of the families in
the book are from the OI community. The book was first published in 2013 and
is still available for purchase through Amazon, Barnes & Noble and other
on-line book stores.
OIF Advocacy Update
Joins Advocates At First Ever Capitol Hill Briefing on Rare Bone Disease
The OI Foundation led the effort to organize a Capitol Hill Congressional
Briefing on March 18, 2015 with other members of the Rare Bone Disease
Advocacy Alliance. The briefing, held at the U.S. Capitol in
Washington, DC, was the first ever forum dedicated to educating Members of
Congress and legislative staff about the impact of rare bone disorders and
the need for greater federal research funding.
Tracy Smith Hart moderated a prominent panel of speakers that included the
Co-Chairs of the Congressional Rare Disease Caucus: Congressman Leonard Lance
(R-NJ) and Congressman Joseph Crowley (D-NY) (pictured). Both
Congressmen spoke about the importance of the Alliance’s advocacy work and
affirmed their commitment to working with their colleagues in Congress to
elevate attention of rare bone disorders in the federal budget process.
audience, which included legislative staff from the House and Senate,
including committees withjurisdiction over the National Institutes of Health
(NIH), heard presentations from Dr. Joan McGowan, Director of the Division of
Musculoskeletal Diseases at the NIH’s National Institute of Arthritis and
Musculoskeletal and Skin Diseases, and from Dr. Jay Shapiro, Director of the
Osteogenesis Imperfecta Program at the Kennedy Krieger Institute. Drs.
McGowan and Shapiro gave an update on research efforts from the government
and academic perspectives and spoke about the need for increased funding and
the need to encourage researchers and physicians to enter the rare bone disease
Jack Kelly, President of the Lymphangiomatosis & Gorham’s Disease
Alliance, and Elspeth Birdsdall, Chair of the OsteoPETrosis Society, with the
assistance of her husband Pat, delivered powerful and impassioned speeches
about the difficulties of living with a rare bone disorder. Their
testimony highlighted the physical and emotional impact that rare bone
diseases have had on them and their families and the challenges associated
with finding informed health care practitioners.
briefing was timed to coincide with the beginning of the federal budget
process as members of Congress develop funding levels for the NIH. The
OIF will continue its strong federal advocacy as an organization and as a
proud founding member of the Rare Bone Disease Advocacy Alliance in the
weeks, months and years ahead to increase the federal government’s response
to the needs of the OI community.
Osteogenesis Imperfecta Foundation
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