Breakthrough - Osteogenesis Imperfecta Foundation

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Article For more details, go to www.oif.org Improvements to the “online communities” coming in 2004 The OI Foundation, with the help of five dedicated volunteers, is planning significant changes to the online communities in the next few months. The changes are designed to add more structure to the program and to make the chats more informative and entertaining to the guests. “The chats are such an incredible resource for the OI community,” according to volunteer chat coordinator Susie Wilson, “and the more community involvement we get, the better the resource becomes!” Clicking on the “Chat” button on the OI Foundation’s website will bring you to the online community functions, including the chat, message boards, and instant messaging functions. Topics and guests The most significant change will be the addition of topics and guests once a month in the chat room. The chat room currently hosts between fifteen and twenty people each Sunday night at 8 p.m. for the “Open Chat” sessions. Often, chat newcomers have just learned of a positive OI diagnosis, and are in search of support, solace, and information. “It’s so wonderful to see a new parent come into the room scared and confused, and leave with a much greater understanding of OI and the way it affects people’s lives,” Susie said. While welcoming new parents and directing them to appropriate OI Foundation resources is one of the primary responsibilities of chat hosts, new parents are by no means the only people in the chat rooms. Each week the rooms draw a fairly consistent and even mix of young adults, single adults and parents— with and without OI— and a sprinkling of teens. The combination creates lively discussions, with chatters sharing basic living tips, discussing the pros and cons of sheltering children with OI to prevent fractures, and even offering personal experiences to illustrate the joys and frustrations of living with the disorder. When the conversation turns personal, or when someone has a specific question or concern they don’t wish to discuss in the open forum, private chat conversations are possible. The monthly chat topic may include guest speakers (if appropriate), and will be posted on the website and advertised through the e-mail newsletters. The “Open Chat” room will also be open for general chatter, and the chat hosts will be available to assist newcomers with questions about OI. Teen Chats are moving to Sunday The other significant change to come in the next month is the transition of the teen chat room to Sunday evenings at 8 p.m. from the current schedule of every other Thursday at 7. The teens will still have their own chat room to use if they wish to chat with one another “without adults watching,” but they will be encouraged to participate in the topic chats and Open Chats. “Often their insight is amazing,” Susie said, “and everyone in the chat room benefits from their enthusiasm and outlook on life, especially newcomers and parents with young children with OI.” Other changes are administrative in nature, but should improve the quality and consistency of the information shared in the chatrooms. The changes will also make it easier for the OI Foundation to follow up with individual chatters’ specific questions and ensure they have the most up-to-date, accurate information. The OI Foundation’s chat rooms are officially hosted each Sunday evening from 8 to 10 p.m., EST, except for some holiday weekends as posted on the website calendar and chat entry page. Chatters are required to have a logon ID and password on www.oif.org before entering the chat rooms, for privacy and security reasons. First time chatters will also have to acknowlege the Chat Policies before they can log in. For more information, check the chat page on www.oif.org or write to webmaster@oif.org. Breakthrough Winter 2004 Page 8
For more details, go to www.oif.org OI Foundation co-sponsors scientific meeting The OI Foundation has agreed to be a co-sponsor, with the American Society for Bone and Mineral Research, of the upcoming Advances in Skeletal Anabolic Agents for the Treatment of Osteoporosis Scientific Meeting. The two-day meeting will review the current status of the field and explore future directions for clinical and basic research into anabolic agents for metabolic bone diseases. Advances in the understanding of bone formation and the identification of signaling molecules may have a significant impact in the understanding and treating of metabolic bone disorders, including osteogenesis imperfecta. Playwright’s scholarship program The Very Special Arts Playwright Discovery Awards Program challenges middle and high school students of all abilities to take a closer look at the world around them, examine how disability affects their lives and the lives of others, and express their views through the art of playwriting. Two scripts are selected by a distinguished panel of award-winning theater artists for professional production at The John F. Kennedy Center for the Performing Arts. Award recipients receive scholarship awards and a trip to Washington, D.C. to view the production. Submission deadline is April 15. For details, visit www.vsarts.org/programs. Conference and hotel registration deadlines Those attending the 2004 National OI Conference are encouraged to register as early as possible. Early Bird registration discounts are available through March 12, 2004. The Foundation has reserved a block of rooms at the Adam’s Mark Hotel at a reduced rate of $109.00 per night, singlequad occupancy, from June 22 through June 27. Hotel reservations must be made before June 3, 2004 to qualify for the reduced rates, and you must mention the OI Foundation when making the reservation. Call the Adam’s Mark National Reservation line at 1-800-444-2326. Items to accomodate special needs (shower chairs, refrigerators for medicine storage, cribs, roll-away beds, etc.) are avaialable on a first come, first served basis, and must be requested seperately through the Dallas Adam’s Mark. After making your reservations, call (214) 922-8000 to request any additional accomodation items for your room. Conference Sholarships may be available in ‘04 The OI Foundation may obtain grant funding for a limited number of scholarships to the 2004 National Conference. Application information will be available on www.oif.org or by calling (800) 981-2663 as soon as the grant is confirmed. Refunds will be issued to any scholarship winners who have already registered. News Notes Sweepstakes Update More than $19,000 has been raised so far in the third annual “Going Places” sweepstakes, with almost a month remaining before the final deadline for entries. Thank you to all of you who have participated in this vital fundraising project. The Early Bird drawing for $250 was conducted Feb. 6, 2004, and was won by Paula & Gene Seay, OI community members. Their winning ticket will be placed back into the box for a chance to win a Grand Prize of a 7-day, 6-night vacation anywhere in the continental U.S., and second and third chance prizes of $250 and $100. Those final three drawings will be held on or about February 27, 2004. If you haven’t already done so, mail your ticket stubs to the Foundation today to be ensure you and those you’ve distributed tickets to are included in the grand prize drawings! For more information, or to enter online (at suggested donation amounts, through midnight, Feb. 24) visit the sweepstakes page on www.oif.org. New video on improving accessibility in offices, homes and businesses now available The Minneapolis Advisory Committee on People with Disabilities has created a video “Access Maze” to demonstrate the challenges— and solutions— for creating user-friendly accessible offices, homes and other living, working and business spaces. The video project was funded entirely through project contributions from the American Institute of Architects and seven local architectural firms. Ordering information can be found at http://www.accessmaze.org. Service Dogs to be first “chat topic” in 2004 The first in a series of scheduled chats focused on a single topic will be held at 8 p.m. (EST) March 28, 2004. The topic will be “service dogs,” and will include members of the OI community who own service dogs and have recently been through the training program. Staff members from two of the larger service dog providers have been invited to join the chat to answer your questions about the application process and eligibility for obtaining a service dog. To join the chat, simply log on to www.oif.org and click on the “Chat” button in the left margin. The regular weekly “Open Chat” will be open in a separate room. For more information, write to bbradner@oif.org or webmaster@oif.org. Page 9 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: Article How do we estimate the numb
Page 11 and 12: 2004 Conference Information Confere
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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