Osteogenesis Imperfecta Foundation

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In this issue...

Upcoming Events
From the OIF Information Center
You Could Win!
OIF Advocacy Update

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Clinical Meeting on OI
Make Your Physician Aware of Next Month’s Clinical Meeting on Osteogenesis Imperfecta

OI Foundation Medical Advisory Council members Dr. Jay Shapiro and Dr. Cathleen Raggio will be hosting a Clinical Meeting on OI October 5-7, 2017 at the Embassy Suites by Hilton Baltimore at BWI Airport. This meeting is designed for clinicians and medical professionals who directly manage the care of children and adults living with OI. Lectures and discussion will cover the clinical perspective of topics such as growth impairment, dental disease, pulmonary function, cardiac disease, rehabilitation and function, orthopedic treatment, pharmacologic treatment, quality of life issues and much more!  There is no charge for clinicians to attend this meeting; however, travel accommodations must be made individually.

Please share this information with members of your medical team who have expressed interest in learning more about clinical strategies to improve the care and treatment of individuals living with OI. Visit www.regonline.com/clinicalmeetingonOI to view the meeting agenda and register. Email bonelink@oif.org or call (301) 947-0083 if you have any questions.


Upcoming Events

We are less than two weeks away from the 3rd Annual Strong Bones Chicago Gala on Saturday, September 30, 2017!

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strong bones sheridan photo booth

Don't miss the Strong Bones Gala Chicago on September 30, 2017 at the Chicago Cultural Center!

Tickets are still available for $100 per person, $180 per couple or $850 for a table of ten! Your ticket to this evening reception includes great food, full bar, entertainment, live & silent auctions and a chance to fund the mission of the OI Foundation! Please join us for this fun-filled evening to benefit the Osteogenesis Imperfecta Foundation.

Can’t come to the event? You can still participate! Check out the online auction at www.biddingforgood.com/oif to bid on amazing auction items including: two tickets to see Hamilton in Chicago, four tickets to the Shedd Aquarium, signed sports memorabilia, and more!


October 28, 2017
Beef & Brew; Garfield, NJ

beefsteak 14Beefsteak is Back! We are so excited to be returning to the Three Saints Russian Orthodox Church in Garfield, NJ for an evening full of fun and excitement! We will have unlimited filet mignon, salad, fries, beer and soda (Chicken option and Kids meals are also available), a fantastic silent auction and the legendary tricky tray!. Join us on Saturday, October 28th for $45 per person for this event that will help the OI Foundation respond to more than 7,000 inquiries each year for medically verified information and support; produce new information resources for individuals and medical professionals; fund research and support the Kasper Kendall Conference Scholarship Fund.
Click here for more information.


boots blingNovember 4, 2017
Boots & Bling; Houston, TX

You heard right! The OIF Fine Wines Strong Bones program is coming to HOUSTON, TEXAS! Join us for an evening of award-winning BBQ, full bar, auction items and raffles at the Armadillo Palace for the first-ever Boots & Bling for Better Bones!
Click here
for more information.


Portland Save the Date

November 11, 2017
OIF Regional Conference in Portland, Oregon

OIF Regional Conference - Speaker Announcement

The OI Foundation is proud to announce the speakers for the one-day Regional Conference in Portland, Oregon, which will be held Saturday, November 11 at the Collaborative Life Sciences Building on the campus of Oregon Health & Science University. We are thankful to the meeting co-chairs, speakers, and the staff at OHSU for volunteering their time and expertise to make this meeting possible.

(Co-chair) Eric Orwoll, MD - Oregon Health & Science University
(Co-chair) Lindsey Nicol, MD - Oregon Health & Science University

Peter Byers, MD - University of Washington
Charles d'Amato, MD - Shriners Hospitals for Children – Portland
Amanda Stolz, DPT - Shriners Hospital for Children – Portland

If you are interested in attending this one-day meeting, there are still spaces available. Visit www.oif.org/regionalconferencePortland to learn more and reserve your spot today! 

From the OIF Information Center


Contribute to OI Research through the Brittle Bone Disorders Consortium (BBDC) Studies
One of the major roadblocks to answering scientific questions about OI is designing studies that are large enough to uncover useful information. Whether the study is an in-person clinical trial or an online survey, it can be difficult to recruit enough people to participate. With a rare and variable condition like OI, it is important to include people of all ages, men and women and of course a wide range of OI types. The OI Foundation is relying on the OI community to support the Brittle Bone Disorder Consortium (BBDC) by joining the contact registry and participating in upcoming studies, online surveys, and other research activities that will help accelerate OI clinical research. The BBDC longitudinal study is also recruiting new participants to investigate how different types of OI change as individuals’ age. For more information on the BBDC longitudinal study or to join the contact registry, visit www.rarediseasesnetwork.org/cms/BBD.

The BBDC is also sponsoring a multicenter clinical trial to study the safety of fresolimumab treatment in adults with moderate-to-severe osteogenesis imperfecta (OI). This study will be conducted at two sites- Baylor College of Medicine in Houston, Texas and Oregon Health and Science University in Portland, Oregon. Adults ages 18 years and older who have a diagnosis of moderate-to-severe OI and have no personal history of cancer or organ transplantation may be eligible to participate. Visit the Clinical Trials Website to learn more and determine your eligibility. In order to participate, you must personally contact the study coordinator of either participating institution by phone or email. Please use the information below to inquire about participation.

Baylor College of Medicine
Principal Investigators: Sandesh Nagamani, MD, Reid Sutton, MD, and Brendan Lee, MD, PhD
Contact: Dianne Dang
Phone: (713) 798-6694
Email: diannen@bcm.edu

Oregon Health & Science University
Principal Investigator: Eric Orwoll, MD

Contact: Melanie Abrahamson, MPH, CCRP
Phone: (503) 494-7480
Email: abrahamm@ohsu.edu

We greatly appreciate your attention and interest in advancing the treatment of osteogenesis imperfecta.


Resource Reminder for OI Community Members affected by Hurricanes Harvey and Irma
Hurricanes Harvey and Irma have impacted thousands of people over the last few weeks.  Many OI community members in Texas, Florida, and surrounding areas were personally affected by these disasters. The Texas Rare Action Network and the National Organization for Rare Disorders (NORD) partnered to develop a list of disaster relief resources for families in the Houston area- many of which also apply to other states. Click here to explore their list of resources.

The OI Foundation also offers an Impact Grant program once a year to provide support to individuals and families living with OI who are in need of equipment or services. The application will open in January 2018 and close in February 2018. If you have any questions, feel free to contact the OI Foundation or visit this page on community resources: http://www.oif.org/site/PageServer?pagename=info_communityresources.


podcast seriesOIF Podcast Series

 Leaders in the OI field discuss Multidisciplinary Care, Pregnancy in Women with OI, Pulmonary Issues, Transitioning from Pediatric to Adult Care, Dental Issues, Spinal Issues, and more on the OIF Podcast Series. Listen, learn, share!


OIF Board of Directors Nominations
The OI Foundation is currently seeking nominations for new members of the OIF Board of Directors. The Board Development Committee looks for nominees with qualities such as a personal connection to OI and experience in areas including accounting, finance, fundraising, organizational management, public relations, strategic planning, business and/or law.

If you or someone you know is committed to achieving the mission of the OI Foundation please fill out a nomination form by October 1st, 2017.

You Could Win!

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Click here to enter today!


OIF Advocacy Update

Government Funding, Debt Limit, and Disaster Relief
On Friday, September 8, Congress sent President Trump a bill that provides $15.25 billion in hurricane relief funding while also funding the government and raising the nation's debt limit for an additional three months. President Donald Trump is expected to swiftly sign the bill, which delivered on the deal he struck with Democrats earlier in the week.

ACA Market Stabilization
This month, the Senate health committee held four hearings over two weeks to hear testimony from governors, state insurance commissioners, insurance and hospital executives, and other health industry officials on how best to stabilize the ACA health insurance marketplace. The committee hopes to advance a bipartisan bill that encourages insurers to participate in the ACA marketplaces in 2018.

Children’s Health Insurance Program
Congress has until September 30 to decide how long to extend the Children’s Health Insurance Program (CHIP), which provides coverage for nearly 9 million children who fall in the gap between Medicaid eligibility and the ability to afford private health insurance. The longer Congress waits to renew the program, the more likely it will be that states have to impose enrollment slowdowns or even cancel policies.

Osteogenesis Imperfecta Foundation

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804 W. Diamond Ave, Suite 210  |  Gaithersburg, MD 20878
Phone: (301) 947-0083  or  (844)-889-7579  |  Fax: (301) 947-0456

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