Breakthrough - Osteogenesis Imperfecta Foundation

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2004 Conference Information Conference program is packed with information The OI Foundation is pleased to be able to provide you with the following working list of topics for the 2004 biennial conference. A complete conference schedule, including speakers and session times, will be posted on www.oif.org as soon as it is confirmed. Wednesday P.M., June 23 Registration Opens Welcome Reception Thursday A.M., June 24 Wellness Fair Free Hearing Screenings Service Dog Demonstrations First Aid Demonstrations Adaptive Equipment Demonstrations OI: The Basics OI Research Update Thursday P.M., June 24 President’s Reception Internet Users’ Coffee Peer Support Meetings Friday & Saturday, June 25-26 Medical Topics First Aid for Families Women’s Health: Pregnancy Women’s Health: GYN & Menopause Respiratory Issues Pain Management, Infants & Children Pain Management, Adults Hearing Issues, Children Hearing Issues, Adults Neurology, Children Meurology, Adults $350 value for Mental Health Adult Concerns Joint Replacement Surgery Dental Issues, Adults Dental Issues, Children Orthopedic Management Rodding Spinal Issues Exercise Medications Managing Type I OI in Children Managing Type I OI in Adults Infant and Child Care Research Update Genetics: Testing & Diagnosis Post Surgical Care of Children OI and Osteoporosis Ask the Doctors Non-Medical Topics Driving Dating Sexuality & Relationships Independent Living Home Adaptation Clothing, Fashionable Solutions Disability Benefits SSI Employment, Maintaining Benefits Siblings Child Rearing School Issues The Doctor/Patient Relationship Adaptive Equipment Mobility Devices Finances Adoption Travel Keeping Good Medical Records Conference Fees are already set at less than half the cost to the OI Foundation... Peer-to-Peer Support Meetings Parents Who Have OI Type I Age 40 & Up Teens Spouses of People with OI Grandparents Fathers Home Schoolers Parents of Pre-school Parents of School-aged Parents of Teens Young Adults Faith Groups Internet Users Foundation-Related Topics Fund Raising Round Table Support Group Leader Training How to Start a New Support Group Teen Room Topics Adaptive Sports Driving Dating & Friends Fashion Makeup Preparing for College Careers “Meet the Experts” Q&A Sessions KeyPals Social Saturday, June 26 Closing Session Awards Dinner & Talent Show The topics presented in this list are subject to change, based on availability of speakers and scheduling conflicts. $140! Save an additional $30 per attendee! The OI Foundation’s actual cost per person attending the National Conference is more than $350. Through gifts, grants and fundraising efforts by community members, we’re able to offer a registration fee of only $140 for each adult attendee* in 2004. If you register before March 12, 2004, you’ll save an additional $30 with the Early Bird Registration Discount. You won’t find a better value anywhere... register today! * Registration for Children aged 3-17 is $105– only $75 with the Early Bird Discount! Discount does not apply to “Awards Dinner Only” registrants. Breakthrough Winter 2004 Page 10
2004 Conference Information Conference is designed for everyone in the community The OI Foundation’s National Conference is designed to meet the needs of the entire OI community, including people with OI, their families and friends. The information, resources and opportunites for support and networking are abundant, regardless of age, type or severity. While the OI Foundation makes a great effort to ensure the conference is accessible to those with mobility issues, this is in no way meant to imply the conference is only for those with the more severe forms of OI. When developing the program, special care is taken to ensure that the information and support sessions cover the entire spectrum of living with OI. The OI Foundation is always developing new resources and support information for all members of the OI Community, and those resources are showcased at the conference in the Resource Room. The program features new speakers and topics each year to meet the needs of the OI community, based on input from surveys and trends seen in the 7,000 questions and requests for support the OI Foundation responds to each year. This year more than 150 people made suggestions, and the scope of the program has grown considerably (see previous page). While conference is intended to be an information resource, there are a number of social events that take place during the weekend. The friendships developed at these events, and throughout the course of the conference, are a source of support and comfort that lasts a lifetime. Meeting with other people or families dealing with OI is a wonderful opportunity to discuss living successfully with OI with those who have “been there, done that.” It’s an opportunity to learn from others’ successes and failures, and to gain insight and suggestions for dealing with all aspects of living with OI, from childbearing to living independently. Conference is also one of the few times people with OI can interact directly with the nation’s top researchers and medical professionals on a personal or professional basis. Almost all of the speakers at conference will be available to respond to individual questions or concerns in addition to the information they’ll share at their sessions. Attendance by a broad spectrum of people from the OI Community is critical to the conference’s success, and to the health of the OI Foundation. No matter how well you’re “connected” to the OI community, the biennial national conference is absolutely the best way to improve your insight, information, and support structure. If you’re still not sure whether or not you should attend, ask someone who’s been to conference recently, or feel free to contact the Foundation at (800) 981-2663 or by writing to bonelink@oif.org. “No matter how you’re connected to the OI Community, the biennial national conference is absolutely the best way to improve your insight, information and support structure.” Your namebadge will be your ticket to all events in Dallas The OI Foundation will require all registered attendees of the 2004 National Conference to display their namebadge at all times when participating in scheduled events. The new requirment is in response to increased awareness of security and safety concerns, and will help the Foundation control costs during the course of the weekend. The name badges in 2004 will have a space provided on the back– where it can’t be seen– for all attendees to write in emergency contact information. This will assist Foundation and Hotel staff members to locate friends or family in the event of a medical emergency. Additionally, the Adams Mark Hotel reserves the right to restrict access to the hotel and convention areas to registered guests, for security reasons. Your name badge identifies you as an authorized guest and will ensure your ability to enter the hotel property without delay. By requiring the name badge to be displayed at all functions, hotel and Foundation staff members can also ensure that only registered attendees have access to the continental breakfasts, break beverages, receptions and awards dinner. This will prevent other hotel and conference center guests from helping themselves to breaks and running up the Foundation’s catering bills during the weekend. Name badges will be given to all registered guests upon arrival, including children and teens. They may be pinned or hung from mobility devices or strollers or worn, but must be displayed at all times. For more information, contact the Foundation’s Events Manager, Cate Feeser, at cfeeser@oif.org or by calling (800) 981-2663. Information is also be available online at www.oif.org. Page 11 Breakthrough Winter 2004
Page 1 and 2: B reakthrough The Newsletter of the
Page 3 and 4: Dear Friends, President’s Message
Page 5 and 6: UPS Delivers Continued from page 1
Page 7 and 8: Article How do we estimate the numb
Page 9: For more details, go to www.oif.org
Page 13 and 14: metabolic research Center Continued
Page 15 and 16: 2004 Conference Information Remembe
Page 17 and 18: Honorary & Memorial Donations In Ho
Page 19 and 20: Article Understanding medical resea

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