March 2015 E-News

Mark your Calendars!


AW poster 2015National Osteogenesis Imperfecta Awareness Week - May 2-9, 2015!

National Osteogenesis 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 Please contact if you have any questions.

National 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, contact  


Accept the 50,000 Laps – One Unbreakable Spirit® Challenge and make a wave in your community today! 

Jaden photo 3.jpgCommit 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 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



Fine Wines, Strong Bones 2015

abruzzi fwOn 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 community. 

Thank 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. 

Fine 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 Schwartz.

To see more than 150 pictures, click here!


Are 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.

rcSave 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.

Visit the OIF 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 informative events!






OIF Information Center


Looking for Authors

Ms. 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 or write to Ramp Your Voice!, P.O. Box 1286, Winnsboro, SC 29180.


Abilities Expo Schedule

The 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 to learn more.


Parenting Resource

The 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

OIF 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. 

congressmenOIF’s 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. 

The 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 field. 

Finally, 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.  

The 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. 

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Osteogenesis Imperfecta Foundation

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