Breakthrough - Osteogenesis Imperfecta Foundation

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Travel Tips Online Airfare Airlines are offering discounted fares across the board to encourage vacation travel. Since the OI Foundation cannot negotiate lower group rate fares than are currently being offered on line, we encourage you to surf the web now or contact a travel agent while the specials are being offered. The OI Foundation will not be recommending a single airline. IDs are Essential Having a state-issued picture ID is now essential to air travel, due to increased security at airports and ground transportation centers. You will be asked repeatedly to provide proof of identity. While a driver’s license is the most common and preferred ID, passports are permissible, as are work or student picture IDs only if accompanied by a government-issued ID such as an original birth certificate or Social Security card. To be safe, carry multiple IDs in separate bags, if possible. For convenience and safety, you might also want to pick up a badge holder or ID holder at any office supply store, and wear your ID. Accessible Transportation There are a number of agencies in Dallas that specialize in renting accessible vans, and they often deliver directly to your hotel or the airport. Check out pinnacletravel.com (888-894-8747) or wheelchair-getaways.com (800-642- 2042) for more information. Getting Beyond Checkpoints While posted security signs say noone without a boarding pass may go beyond the checkpoints, persons assisting someone with a disability are allowed access all the way to the boarding gate. The escort must have a valid ID. Airports and/or airlines will also provide curb-to-gate assistance to those with a disability who are travelling alone. Medical Carry-ons Travellers are now limited to two carry-on bags each, but that restriction does not apply to medical equipment, supplies, or assistive devices. Pediatric Aisle Chair Pediatric-sized aisle wheelchairs, 18 inches off the floor, and narrow enough to fit between the rows of seats, are now available on some airlines. Call in advance to find out if the chair is available. Oxygen, Wheelchair Info Excerpts from a Q&A on traveling can be found on page 12 of this issue. Reprints are available by contacting the foundation offices, or online at www.oif.org. There’s still time to participate in the Bone China Tea Imagine a fund raiser where you don’t have to worry about attire, transportation, weather, food allergies, babysitters, dancing ability, access, schedule conflicts, or even being on time. In fact, the “event” is delivered to your door with the mail. The OI Foundation Bone China Tea takes place in the comfort and convenience of the invited guest’s own home. You tell the Foundation how many people you wish to invite, and we’ll send you formal invitations to address and forward to your friends and family, asking them to “join” the event by staying home and relaxing with a hot cup of tea. It’s suggested that the money saved on new clothes, babysitters, transportation, and other expenses typically associated with a fund-raising event be donated to the OI Foundation. It’s never too late to participate in this unique fundraising event. If you would like to invite someone to take part in the Bone China Tea, or would like additional information about the event, please contact Jenny Wilson (e-mail JNWILSON@aol.com, telephone (239) 482-6892), or the OI Foundation (e-mail BoneLink@oif.org, telephone (301) 947-0083). A small number of invitations are still available on a first-come, first-served basis. Breakthrough Winter 2004 Page 14
2004 Conference Information Remember your first conference? More Travel Information Conference Fees Continued from back page conference, and the event has drawn larger and larger numbers of attendees.” The Foundation has kept the registration fees stable though public and private grants to subsidize costs, becoming more efficient in planning and scheduling the three-day event, and through the generous support of the OI community. Volunteers have also had a great impact, providing key services such as staffing the resource room. “We also spend a lot of time at the bargaining table to keep costs as low as possible,” Bradner said. Staff and Board members also go through an extensive review process after each conference, using input from the conference surveys, to determine where else they can shave a few dollars off the budget for the next conference. For example, in 2004 the Foundation will ship fewer resources to the conference, to save more than $1,000 in freight charges. The files will be transferred electronically, then printed in Dallas the Conference can be overwhelming. So many people to meet, functions to attend, sessions to go to... people often confess after the fact that they were “overwhelmed” at their first conference. The confusion is even greater for those who aren’t familiar with the OI community. New parents of a child with OI, researchers, doctors and even friends and coworkers often don’t know which way to turn once they leave the registration desk. The OI Foundation is introducing a brand new program to conference in Dallas this year. We plan to welcome all “newcomers” at an open house, hosted by community members who’ve been to at least two conferences. The volunteers will assist the newcomer in choosing relevant sessions to attend, answer any questions they might have about the conference, and most importantly, introduce the newcomer to others to help him/her feel more comfortable and welcome. The open house will be open Wednesday afternoon and Thursday morning during registration. If you’ve been to an OI Foundation National Conference two or more times and would like to help welcome conference newcomers, please volunteer to participate by checking the appropriate box on the registration form. For more infomation about the program, contact the Foundation by writing to bonelink@oif.org or calling (800) 981- 2663. “The actual cost to the OI Foundation for each person attending conference is more than $350.” week before conference, rather than shipped across country. An online ordering system will also be available to have resources shipped directly to the attendees’ homes while they’re still attending the conference. The Foundation is also limiting the number of audio/visual pieces used during the conference weekend through a more efficient scheduling of speakers and session panels. “In all, I think our budget is as lean as we can possibly make it,” Bradner said, “but without some additional sponsorships or grants, it will be a challenge to keep the 2004 conference in the black.” The actual cost to the Foundation for each person attending conference in 2004 is more than $350. Registration fees for each guest do not Access-Able Travel Source is a one-stop resource for disabled travel planning and information, which includes: • Lists of equipment rental and repair shops, • Reviews of attractions and details about accessibility, • Lists of lodgings with alert kits, roll-in showers, alert kits, closed caption TV, alert kits, or any combination of services, • Aiport accessibility tips and support information, and • An extensive list of disability lodging and travel and web sites. www.access-able.com (303) 232-2979 even fully cover the costs of their meals. The costs associated with audio/visual support, child care, teen activities, staff travel, freight, and all the expenses associated with bringing the nation’s top doctors, researchers and subject matter experts to the event to speak at the sessions and panels must be covered by the Foundation. Although sponsorships, exhibitors and grants increase each year, the OI Foundation must cut back on other areas of the budget to pay the conference bills. Board members are committed to keeping the conference affordable as they set fees for each conference. If you would like to make a contribution to help cover conference expenses, or know of a vendor who might be interested in exhibiting or sponsoring an event at conference, please contact the Foundation offices at (800) 981-2663 or by writing to bonelink@oif.org. Page 15 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 and 10: For more details, go to www.oif.org
Page 11 and 12: 2004 Conference Information Confere
Page 13: metabolic research Center Continued
Page 17 and 18: Honorary & Memorial Donations In Ho
Page 19 and 20: Article Understanding medical resea

Breakthrough - Osteogenesis Imperfecta Foundation

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