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Symposium Question & Answer Sheet
What is a FOP Symposium? A conference held by the IFOPA to discuss all aspects of living with FOP. The Symposium provides time for families to gather from all around the world to learn from each other, attend workshops on issues about FOP, see tools for helping with independent living and have a chance to meet with doctors associated with FOP care. How often does the IFOPA have Symposium's? Due to the significant cost involved, the IFOPA has been able to hold a symposium every 5 to 7 years. The IFOPA has had 3 Symposiums in its history. In 2007, this will be the Fourth International FOP Symposium. When will the next Symposium be held? Due to the enormous cost involved in holding such an event and the increase of international groups holding meetings, the Fourth International FOP Symposium may be the last large gathering hosted by the IFOPA. The review of more cost efficient ways for our members to meet will be considered in the future. Who goes to the Symposium?
Who raises the money for the Symposium?
What is a registration fee? There are many costs involved in hosting the Symposium (meals, childcare, medical clinics with the doctors, workshops, Resource Center , entertainment and much more). A registration fee is a fee charged to those who attend to help cover the cost of his or his attendance. Unlike traditional conferences held in the USA where attendees pay their entire share of the cost to attend an event, the IFOPA helps each person attending with a significantly reduced registration fee by fundraising to cover these costs. Why does the price go up per person? Why doesn't it get cheaper to bring more people in a family? The IFOPA has set a budget for the event. Based on the limited number on people who can attend (450) people, the actual IFOPA cost for a person to attend the symposium is $1300 per person. The registration fee increases because the IFOPA feels strongly it can support the FOP member plus two additional attendees by providing the lowest registration fee possible. IFOPA is proud to be able to support each family by paying the larger portion of the cost of each person's attendance to the Symposium. Unfortunately, we are unable to continue to fund beyond 3 people at the lowest level. Why do I have to pay a higher registration fee if I do not stay at the JW Marriott? The IFOPA must guarantee a certain amount of hotel guest rooms to get the meeting space needed for the event and the hotel room rate of $159 per night. If our attendees choose not to stay at the hotel, the IFOPA will still be responsible for covering the cost of the hotel rooms, meals, etc. Therefore, if you choose not to stay at the hotel, you will be required to pay an increased registration fee to cover the expenses of being a non-Marriott guest at the Symposium. What do I need to pay for in order to attend the Symposium?
Why isn't there full sponsorship available to attendees? With a limited financial assistance budget, the IFOPA was faced with only providing full sponsorship to approximately 5 families. The IFOPA felt they could provide financial assistance to more members by reducing the registration fee (for the first three people per family) in hopes that this assistance will allow more IFOPA members the possibility to attend. Why do we have to pay for the hotel up front? You will need to pay your registration fee and hotel fees about 4 months before the event. In order to secure the best price possible for each person, the IFOPA has committed to a certain number of hotel guest rooms for the Symposium. Thirty (30) days prior to the event, the IFOPA has the ability to release a percentage of rooms that are not needed without a cost to the IFOPA. Therefore, it is extremely important for the IFOPA to have the hotel rooms paid in advance to insure the most accurate room count. Can I cancel my hotel room prior to the event without any penalties? You have the ability to cancel your hotel guest room 30 days prior to the Symposium without any penalty. After the 30 days, you will be responsible for the FULL cost of the hotel room. The IFOPA encourages each person attending to secure travel insurance in case your plans change or you are unable to come. Can my doctor from home attend the Symposium and at what cost? Yes, they can. They would be responsible for the following costs:
When will I receive my Registration packet in the mail? Registration packet will come in the mail the beginning of April 2007. You will have until June 8 to register. However, there is room for 450 people to attend the Symposium so it is best to register as soon as possible in order to secure your spot. What happens after I register? You will receive a confirmation packet in the mail. This packet will include confirmation of your hotel accommodations, clinic appointment(s) (if needed), hotel room bill (due by July 9), registration fee(s) balance (due at check-in), travel tips and more pertinent information you will need before attending the event. Will there be a cost to see Drs. Kaplan and Glaser or other doctors in the Special Care Clinics? No, ALL the doctors donate their time. Please bring as much medical information with you (such as current x-rays and dental records, etc) in order for doctors to provide you with the best consultation. Will I be able to schedule a clinic appointment to see Drs. Kaplan and Glaser? Priority will be given to those families that have never met with Drs. Kaplan and Glaser before. All other clinic attendees will be on a first come, first served basis. You must register for Dr. Kaplan and Glaser's clinic by using the IFOPA registration form. DO NOT contact Dr. Kaplan directly for an appointment. We will do our best to accommodate everyone. What are Specialized Care Clinics? Professionals in the areas of dentistry, orthodontics and occupational therapy will provide consultation to FOP members in “Special Care Clinics." Will I be able to schedule an appointment for the Specialized Care Clinics? Everyone is eligible for any appointment with the Special Care Doctors. All clinic appointments are on a first come, first served basis. You must register for the Special Care Clinic by using the IFOPA registration form. We will do our best to accommodate everyone. Should I bring my child to the Symposium? The decision to bring your children to the Symposium can be a difficult decision for families. The IFOPA takes special care to introduce new children and new parents to the FOP community by creating a supportive understanding environment. Every family that has a member with FOP has had the same decision to make. Some parents feel that the early exposure to the community helps them accept their diagnosis while others choose to delay the exposure until the child themselves have an interest. There are parents that come to the Symposium without their children in order to learn more and get the exposure themselves. The children tend to have a very good time playing and getting to know each other. If you have concerns and would like input from others experiences, we encourage you to pose your questions on foponline and hear how others have handled the decisions. Will the childcare professionals know about FOP and how to handle children with FOP? It is important to the IFOPA to provide a safe and fun place for the children who attend the Symposium. That is why the IFOPA will provide literature, show videos and hold several meetings with the childcare professionals to educate them about FOP. We are also planning on having several volunteers from the FOP community assist the childcare professionals. Why is childcare not provided for ages 0-4? Due to the specialized care needed for infants and toddlers ages 0 – 4 yrs., the hotel childcare program that is being used by the IFOPA does not offer services for this age group. If you would like suggestions of what other families are doing for childcare for this age group, please contact the IFOPA office. Will the childcare program include caregivers that speak other languages? No, this is due to the high cost involved in providing translators. Is there a cost to attend the teen center? No, a free teen center with limited supervision will be available for ages 13 to 19. Will there be childcare services before and after the Symposium? If arriving early for clinical appointments or staying in the hotel after the Symposium and need childcare, it will be the families responsible to make their own childcare arrangements with the Ritz Kids (the hotels child care program) according to their regular fee schedule and hours. A full description of the IFOPA's child care program held during the days of the Symposium and the Ritz Kids childcare regular program flyers will be provided in your registration packets. Where is the nearest hospital? There are two major hospitals located near the JW Marriott. Orlando Regional Sand Lake Hospital is located at 9400 Turkey Lake Road, Orlando, Florida. The phone number is 407-351-8500. This hospital is approximately 8 minutes from the J.W. Marriott. Orlando Regional Healthcare is located at 1414 Kuhl Avenue, Orlando, Florida. The phone number for the hospital is 321-841-5111. This hospital is approximately 15 minutes from the J.W. Marriott. What kind of topics will be discussed in the Workshops? The symposium workshops are a great opportunity for all persons with FOP, their family members and caregivers to learn from a variety of topics that were said to be important to the FOP community through the responses given in the Symposium Workshop survey. Workshop topics range from titles such as “FOP and its affects on the family” to “advocating for yourself or your child in the medical world.” The registration packet will include a full listing of all the workshops that will be offered at the symposium. Please remember to sign up for your workshops with your completed registration form. What is the Resource Center? There are really two parts to this wonderful project. One part is the Resource Center Booklet that will contain general information about each item in the Demonstration and Display section of the Resource Center room. At a later date, this will be integrated with an updated and expanded version of the Overcoming Obstacles database that is already available on the IFOPA web site, www.IFOPA.org. This database will eventually include the hundreds of gadgets, experiences, wisdom, adaptations, ideas, tools and other resources of the FOP community that we have collected for everyone to use. The second part of the FOP Resource Center is the exhibition that will be at the Symposium in August. The Symposium FOP Resource Center will offer people with FOP and their families the opportunity to explore tools, ideas, specialized equipment (both commercial and homemade) and other adaptations specifically collected for those with this rare condition. Because of the rarity of FOP, diagnosis is usually followed by fear, helplessness and isolation. The FOP Resource Center will eliminate those feelings by enabling the FOP community to not only see and try adaptive tools, but do in the safe setting required by the condition, and with the assistance and support of trained volunteers, and each other. There will also be vendors, materials on other tools, therapists, and much more. The impact is usually empowering and life-changing. Together and separately, the Booklet and Symposium FOP Resource Center offer IFOPA members the collected wisdom of the FOP community and contain a wealth of FOP-specific information that will one day be available for everyone to access from home. How can I help? Donate, volunteer to speak at a workshop, help out with the childcare program, help man a table at the Resource Center, be a greeter and nametag checker & more. For information about making a donation or volunteering, please contact Linda Daugherty, IFOPA Executive Director at (407) 365-4194 or by email at lindaifopa@bellsouth.net. What can I do to raise money for me to get to the Symposium? We encourage everyone to contact their local service organizations that provide support to others on a regular basis. Rotary is an international organization that often helps people attend such conferences. Whether you belong to a church, club or school, there may also be an opportunity to run a small fundraiser to help support your travel to the Symposium. First step is to speak up and let people know you are in need of help. You can also ask family and friends at gift time to provide you a donation towards your trip. Another possible source could be the Make A Wish Foundation; in the past this has helped other FOP members attend.
The IFOPA has many fundraising ideas and is here to help you. Please contact Ken Crawford, IFOPA's Director of Development at 407-365-4194 or kencifopa@bellsouth.net for ideas and support. What can our family do in the area? Orlando is a major tourist destination. The IFOPA will provide you a list of attractions and ticket information in your registration packet. What activities will be at the Symposium? There will be plenty of activities for all ages at the Symposium:
We invite any other questions you may have so that it may be answered and added to this list for the benefit of everyone. Please send your questions to: Linda Daugherty at lindaifopa@bellsouth.net. Together, We Can Move Mountains! |
More FOP-related information:
Symposium FAQ
15th Annual Report (PDF)
FOP Facts in Brief (PDF)
IFOPA Facts in Brief (PDF)
In Search of a Cure (video)
FOP Advocacy
FOP Highlights:
Introduction
Opening
Doors for More Common Conditions
Research
Needs
Helpful resources:
Browse
Resource Center
Newsletters
Overcoming
Obstacles