What is Fibrous Dysplasia
Fibrous dysplasia is a disease that causes growths or lesions in one or more bones of the human body. These lesions are tumor-like growths that consist of replacement of the medull...
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ANNUAL FD CONFERENCE
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Plan Now to Come to FD Foundation’s Fourth Annual Conference October 25, 2008
Let us hear from you! Send an e-mail to info@fibrousdysplasia.org and let us know if you plan to attend. The Program - The Fibrous Dysplasia Foundation will hold its fourth annual conference on Saturday October 25, 2008 at the Hyatt Regency-Bethesda in Bethesda, Maryland. This all day meeting will feature the most knowledgeable medical experts on fibrous dysplasia, McCune-Albright Syndrome, and Cherubism. Dr. Michael Collins from the National Institutes of Health will be joined by doctors who will address issues such as orthopaedics, craniofacial, endocrine, ear, nose and throat (ENT), exercise and rehabilitation. The speakers will be: Michael T. Collins, MD - Chief, Skeletal Clinical Studies Unit, National Institute of Dental and Craniofacial Research, National Institutes of Health Frederick Singer, MD – Endocrinologist, John Wayne Cancer Institute, Santa Monica, CA Marilyn Kelly, RN – Research Nurse, Skeletal Clinical Studies Unit, NIDCR, NIH Lisa Heral, RN – FD Foundation Board Member Lynn Lindaman, MD – Orthopaedic Surgeon, Des Moines, IA Jeff Kim, MD - Staff Neuro-Otologist (ear, nose and throat), National Institutes of Health Scott Paul, MD - Senior staff physiatrist, Rehabilitation Medicine at the NIH Edmond FitzGibbon, M.D. - Nuero-Ophthalmologist, NIH Pam Robey, Ph.D. - Chief, Craniofacial and Skeletal Diseases Branch, NIDCR, NIH In addition to the presentations to the whole group there will be roundtable discussions on specific issues where small groups can have more exchange with the speakers. Agenda/timetable for FDF October 25, 2008 8:00 - 8:45 am - registration 8:45 - 9:00 am - introductions and welcome 9:00 - 9:15 am - special recognition of Stars in Constellation Awards 9:15 - 10:00 am - Overview of FD/MAS - Collins 10:00 - 10:30 am - Endocrinology Issues for FD/MAS - Singer 10:30 - 11:00 am - break 11:15 - 11:45 am - ENT/craniofacial issues - Kim 11:45 - 12:15 pm - Ophthalmologic/craniofacial issues - Fitzgibbon 12:15 - 1:00 pm - lunch 1:00 - 1:45 pm - orthopaedic issues in FD - Lindaman 1:45 - 2:15 pm - Pain and health related quality of life in FD - Kelly 2:15 - 2:30 pm - report from Rare Bone Disease Scientific Meeting - Lisa Heral 2:30 - 3:00 pm - break 3:00 - 3:30 pm - Rehabilitation and exercise - Paul 3:30 - 4:00 pm – Current research and future directions for treatment- Robey 4:00 - 4:30 pm - parents and children panel – 4:30 - 5:00 pm - round table discussions. Cherubism Long bone issues and problems Craniofacial issues and problems Pain treatment 5:00 - 5:30 pm - reports back from roundtable discussions and final Q&A session A Chance to network and share - As at past meetings being able to meet and talk with other individuals and family members is often the most remembered part of the meeting. Last year there were almost 70 people at the meeting in Indianapolis. We can accommodate even more this year. Cost - As in the past the registration fee will be only $25 per family. This will include light breakfast food, snacks at breaks and lunch. Obviously this does not come close to covering the expenses of the meeting. Thanks to many generous donations we can keep the cost to you down. Accommodations – The meeting will be at the Hyatt Regency Bethesda Hotel. Bethesda is just north of Washington, DC and near Interstate 95 and 495. The hotel is directly above a stop on the Washington area METRO subway system. This means you can take a subway from Reagan National Airport or Union Station (Amtrak) and you can take the subway downtown on Friday or Sunday to see some of the wonderful and mostly free sights and museums in our nation’s capital. We do not have a block of rooms at the Hyatt as this can be a very expensive situation if we were not to use all of the rooms the hotel held for us. In a recent check of popular travel and hotel sites we found rates as low as those that the Hyatt would have given us in a block rate. Currently it appears that the room rate would be approximately $199 plus taxes. There are other nearby hotels that are listed below. We urge you to go ahead and make room reservations now. You can always change that. You can go directly to the Hyatt site (www.bethesda.hyatt.com) call the Hyatt at 301 657 1234 or visit sites such as www.hotels.com, www.expedia.com, www.orbitz.com. Other Nearby Hotels The Hyatt is at 7400 Wisconsin Ave. Here are some nearby hotels: Bethesda Court – 7740 Wisconsin Ave – 301-881-5200 Marriott Residence Inn – 7335 Wisconsin Ave. 301-718-0200 Holiday Inn Bethesda – 8120 Wisconsin Ave – 301-652-2000 Points by Sheraton – 8400 Wisconsin Ave – 301-654-1000 American Inn – 8130 Wisconsin Ave – Travel – The hotel is just north of Washington, DC. Bethesda is near I-95 and I-495. I-66 is about 10 miles away. While the Washington, DC area is served by three airports, Dulles International (IAD), Reagan National (DCA), and Thurgood Marshall in Baltimore (BWI). Reagan National will be the most convenient since you can use the METRO subway system that will take you to a stop that is part of the Hyatt Regency Bethesda Hotel. Amtrak trains go to Union Station in downtown Washington. Again, you can take a METRO subway directly to the Hyatt Regency Bethesda Hotel. We need to hear from you as soon as possible so we can start making all of the logistic decisions that need to be made. If you are interested we will try to match you up with others from your area who might want to share a ride or travel together or share a room in Bethesda. You don’t have to pay the registration fee yet but we need your name, address (both physical and e-mail) and whether you want to consider sharing a room or a ride. Attached is a Word document for registration. If you cannot open it you can just send an e-mail with the names and addresses of who will be attending and we will get back to you for any other needed information. Charlie Harles, President Fibrous Dysplasia Foundation info@fibrousdysplasia.org www.fibrousdysplasia.org Email me if you would like the registration form for the conference and I can send it to an outside address. You will have to send it back to charlie@harles.com Posted on 10/02/08, 06:10 pm |
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Charlie,
I’ve invited Dr. Michael Mannstadt from Harvard University. He will be attending the Rare Bone Meeting. He is an endocrinologist, interested in learning more about the FD Foundation and serving as a referral source in the northeast. He will be an active observer. He won’t be able to stay the whole day, but at least part of it. mike Michael T. Collins, M.D. Chief, Skeletal Clinical Studies Unit CSDB, NIDCR National Institutes of Health Building 30, Room 228 MSC 4320 Bethesda, MD 20892-4320 301-496-4913 direct 301-402-0824 fax 301-496-1211 page 301-728-0329 cell mc247k@nih.gov this is a follow up email i received from another member of my fdsol support group.. he is a doctor with the National Institute of Health.. 
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I think it is great you are posting that info on here. Just because someone doesnt comment on it, does not mean it didnt help them in some way.
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