February 2015 Enews


Mark your Calendars!

Fine Wines, Strong Bones

Join the OI Foundation for the 15th anniversary of its flagship fundraising event—Fine Wines, Strong Bones—at the Gaylord National Resort on Saturday, February 28, 2015. Enjoy an evening of food, wines from around the globe, hundreds of silent and live auction items and casino games. Your participation will help the OI Foundation continue its mission to fund research, provide medical information and support, develop new resources and increase public and professional awareness about OI.  A single ticket is $75; a couple’s ticket is $130 (a $20 savings). www.oif.org/finewines

 

 

rdd 2015Rare Disease Day 2015

Rare Disease Day, an international awareness-raising event, has an ever-growing number of participating countries, with the involvement of more than 1,000 patient organizations. The Osteogenesis Imperfecta Foundation is proud to take part in Rare Disease Day 2015 on Saturday, February 28, 2015.

 

Take part in National Blue Jeans for Better Bones Day in honor of Rare Disease Day on Friday, February 27, 2015, or during National OI Awareness Week 2015 on May 8th! To start planning your Blue Jeans Day, contact Danielle at dcymber@oif.org.



From the OI Foundation

 

Bennett Clayton Foundation for Children with OI- College Scholarship Program

The Bennett Clayton Foundation for Children with OI coordinates a college scholarship program for high school seniors and undergraduates diagnosed with OI who reside in Minnesota, Wisconsin, Iowa, North Dakota, or South Dakota. Successful applicants will be awarded $3,000, renewable for up to three additional years. The deadline for applications is March 1st. Please share this information with eligible friends or family members. See their website for more details www.bcfforoi.org.

 

Become a Member of the OIF or Renew Your Membership Today!

We count on the support of our members to help fund research, provide information and support, develop new resources, expand support groups and increase public and professional awareness about osteogenesis imperfecta.
Become a member or renew your membership today!

 

Limited Edition Wristbands for Awareness Week

We are so excited to announce a new product in the OI Foundation’s online store! These limited-edition wristbands are made of 100% silicone, feature a fun blue and yellow swirl, and are embossed with "Unbreakable Spirit®”!Limited Edition OI Awareness Wristband

Pre-order by March 15th to receive your wristbands in time for OI Awareness Week, May 2 - 9, 2015.

 

 

 
 

OIF Regional Conferences: Uniting Unbreakable Spirits

The 2015 series of the OI Foundation’s Regional Conferences successfully launched in Los Angeles, CA, on Saturday, February 7th.  Nearly 200 parents, adults, children, volunteers, and medical professionals attended the one-day meeting at Shriners Hospitals for Children - Los Angeles.  Speakers shared current information about managing OI and each session inspired discussions between families, adults living with OI and the experts.  Attendees participated in a full day of sessions including Understanding OI; Managing Bones, Scoliosis and the Spine; Managing More than Bones; Advocating for Yourself; Raising a Resilient and Healthy Family for Parent; and a closing session on Life with OI: Incorporating Physical Activity.  In addition to the official sessions, several volunteers led lunchtime discussion groups.

We owe a sincere thank you to Dr. Gayle Tyerman and the staff of Shriners Hospitals for Children – Los Angeles for the support, staff availability and generous hospitality. The OIF would also like to thank the meeting attendees, the conference speakers, and volunteers for their participation. Conference speakers included Dr. Jay Shapiro and Dr. Deborah Krakow Dr. Gayle Tyerman, Dr. Robert Cho, Dr. Susan Bukata, Susie Wilson and physical therapist Chris Caron. Panelists included OI community members Atticus and Debbie Shaffer, Jessica Mansour, Bill Scarberry, and Tony Jacobsen. 

The OI Foundation is looking forward to the next two 2015 Regional Conferences in Stamford, Connecticut, on May 16th and Minneapolis, Minnesota in the autumn. For more details or to register for the next OIF Regional Conferences, please visit www.oif.org/regionalconference. See the next issue of Breakthrough for the full report and more pictures of the OIF Regional Conference in Los Angeles. We hope to see you at one of the upcoming meetings!

 

Regional Conference First Time Attendees













The opening session of the OIF Regional Conference in the atrium of the Shriners Hospitals for Children - Los Angeles.  Attendees were asked to raise their hands if they were attending an OI Foundation meeting for the first time. 



Shapiro Tyerman Krakow Hart

 

 

 

 

 

 

 

 

 

 

 

 


Dr. Jay Shapiro, Dr. Gayle Tyerman, Dr. Deborah Krakow, and OIF CEO Tracy Hart

 

Atticus Regional LA

 

 

 

 

 

 



Atticus and Debbie Shaffer participated on the Healthy Families/Raising a Resilient Family Panel Session.

 

 

 

OIF Information Center

Free Webinar Series on Transitioning Medical Care
The New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) is hosting a webinar series titled "The Transition of Patients with Special Health Care Needs to Adult Medical Care." The presenters will be sharing information for anyone interested in learning more about transitioning from parental care to self care and from pediatric to adult medical services. The series will meet seven times. Individuals and families are encouraged to attend to better understand their role in medical transition care. Learn more and register at https://attendee.gotowebinar.com/regist…/1412553946587002114. If you have any questions, please contact NYMAC at (518) 474-7148 or nymac@health.ny.gov.

 

Mercy Medical Angels
Mercy Medical Angels (MMA) is an organization based in Virginia. For over 40 years MMA has been working to assist financially-stressed families and individuals who need transportation to a distant specialty medical center. Through their National Patient Travel Center and multiple charitable partners, this group offers a unique service. For information, visit their website at Mercymedical.org or call their National Patient Travel HELPLINE at 1-800-296-1217 or send an email to info@nationalpatienttravelcenter.org.

 

Preparing for College
Besides teaching their college-bound teens to do laundry, parents are reminded to provide lessons on taking charge of their own health. Although these suggestions from the American Academy of Pediatrics are meant for everyone, they are particularly important for the teen with OI.

  • Students need to know how to make a doctor appointment.
  • They need to understand how health insurance works.
  • They need to know their own health history.
  • They should be familiar with the prescription and over-the-counter medicines they commonly use.
  • Parents and students need to be familiar with the general and emergency health care options at college. If college is more than a short distance from home, locate an orthopedist with OI experience before the semester begins.
  • Plan ahead what to do if the student feels sick or gets injured at school.

 

 

 

 

 

 

 

Osteogenesis Imperfecta Foundation

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