February 2015 Enews
Mark your Calendars!
Wines, Strong Bones
the OI Foundation for the 15th anniversary of its flagship
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
Disease Day 2015
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.
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 firstname.lastname@example.org.
From the OI Foundation
Clayton Foundation for Children with OI- College Scholarship
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
Member of the OIF or Renew Your Membership Today!
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
member or renew your membership today!
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
by March 15th to receive your wristbands in time for OI Awareness
Week, May 2 - 9, 2015.
OIF Regional Conferences: Uniting
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!
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
Dr. Jay Shapiro, Dr. Gayle Tyerman, Dr. Deborah Krakow, and
OIF CEO Tracy Hart
Atticus and Debbie Shaffer participated on the Healthy Families/Raising a Resilient Family Panel Session.
OIF Information Center
Webinar Series on Transitioning Medical Care
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 email@example.com.
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 firstname.lastname@example.org.
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
- Plan ahead what to do
if the student feels sick or gets injured at school.
Osteogenesis Imperfecta Foundation
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