NNPDF Family Support and Medical Conference
19th Annual NNPDF Family Support and Medical Conference
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2011 NNPDF Family Conference Registration Packet
FC Registration Form FC Helping Hand Stipend Application
(Family Conference Registration Packets were also mailed to NNPDF member families.)
Friday Night Peninsula Pilots Baseball Game Opportunity!
The 19th Annual NNPDF Family Support and Medical Conference will be held in Norfolk, Virginia, from Thursday, July 28 through Sunday, July 31, at the Sheraton Norfolk Waterside Hotel. Make reservations online. Nestled where the Chesapeake Bay meets the Atlantic Ocean, Norfolk offers historic sites, world-class museums, lush parks, beachfront attractions, great shopping, and much, much more! The NNPDF Family Conference offers families the unmatched opportunity to hear the latest news and information directly from the top experts in Niemann-Pick Disease, and to network with other families who share similar challenges. NNPDF member Judy DeSouza (mom to Bryanna DeSouza, NPC, 1992 - 2006), recently gave this advice to a new member via our listserv group:
When my daughter was first diagnosed, I was so thankful that there was a foundation of support - both emotionally and for medical assistance. Keeping in touch with others in this foundation, NNPDF, has been a huge support for me.... My daughter, Bryanna, died in 2006 at the age of 14 years...Our annual NNPDF Family Support and Medical Conference [will] take place July 28-31, 2011, in Norfolk, Virginia....They have wonderful information sessions that discuss the various medical issues that affect people with Niemann-Pick Disease - all types. If you can make it to the conference, it would be wonderful to meet you in person and there is so much information to assist families....
Thank you, Judy! We hear from families, year after year, how their experiences at the Family Conference provide an incomparable source of love, understanding and support, and we hope everyone will join us in Virginia this July.Norfolk is a spectacular destination for families, providing our members the opportunity to combine the Family Conference with a wonderful family vacation. Check out www.visitnorfolktoday.com for tourism information. A Norfolk brochure was included with the registration packet sent out to all NNPDF member families earlier this spring.
More conference details will be posted on this Web page as they develop. Mark your calendar and start planning your trip to Norfolk and the NNPDF Family Conference! Feel free to contact the NNPDF with any questions or concerns.
Helping Hand Stipend Application deadline -- June 15th
First-Time Fundraiser Contest deadline -- June 30th
Conference Registration deadline -- July 1st
Hotel Reservation deadline -- June 27th
The Sheraton Waterside Hotel, 777 Waterside Drive, Norfolk, has been selected for the 2011 Family Conference. See detailed hotel information and conference rates below. When making reservations, be sure to request the NNPDF Family Conference block room rate. The deadline for special conference rates is Monday, June 27th! Use this link to make room reservations online.
Helping Hand Stipend 
Travel Tips
(Frequently Asked Questions)
Conference Schedule-at-a-Glance
Hotel/Conference Center Information - Sheraton Norfolk Waterside
The Sheraton Norfolk Waterside Hotel, 777 Waterside Drive, Norfolk, has been selected for the 2011 Family Conference. A multi-million dollar upgrade provides all the amenities, with 468 recently-renovated guest rooms and nine suites. Make reservations online. Special Family Conference rates include a choice of rooms:
City View room for $89 per night ($101.57 with 13% taxes and $1.00 fee);
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Harbor View room for $109 per night ($124.17 with 13% taxes and $1.00 fee). Be sure to ask for the special NNPDF Family Conference block rate! The deadline for making reservations at the special rates is Monday, June 27th. Payment for one night's lodging is required to hold your room. Special conference rates include apron dates for those who wish to extend their stay in Norfolk. Special rates are available from Sunday, July 24 - Tuesday, August 2 (departure on Wednesday, August 3), subject to availability. Parking will be available next door to the Sheraton Waterside Hotel at the Dominion Tower Parking Garage for the special conference rate of $7.00 per day.Central Reservations Desk (Toll Free): 888-627-8042
Sheraton Norfolk Waterside Hotel direct number: 757-622-6664
Make reservations online
Shuttle Service between Norfolk International Airport and the Sheraton Norfolk Waterside Hotel
The NNPDF has contracted with Orange Peel Transportation, Inc. to provide shuttle service between Norfolk International Airport and the Sheraton Norfolk Waterside Hotel for attendees at the 2011 NNPDF Family Support and Medical Conference. This shuttle will be provided for NNPDF Family Conference attendees between Wednesday, July 27th and Sunday, July 31st only. Conference attendees must make reservations in advance for specific shuttle times. Under the contract with Orange Peel, the NNPDF will cover shuttle costs for Family Conference attendees who reserve shuttle service in advance using the group code below. To arrange shuttle service, contact Orange Peel Transportation in advance by calling 757-463-7500, or reserve your shuttle seat online at www.orangepeeltransportation.com, using the group code “NNPDF.”
Upon arrival at Norfolk International Airport, proceed to Baggage Claim Terminal and Exit Door 1. Use the crosswalk to the Courtesy Vehicles Stand and meet the Orange Peel Transportation vehicle there.
Friday Night Baseball Opportunity!On Friday night, July 29, the Peninsula Pilots Baseball Team (www.peninsulapilots.com) will host the 10th Annual Kevin Eadie Night in Hampton, Virginia, about a 30-40 minute ride from the Sheraton Waterside Hotel. Kevin Eadie passed away in 2008, at the age of 14, from the effects of Niemann-Pick Disease Type C. He was a beloved batboy for the Pilots for seven years. |
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Friday's Family Conference sessions will end by around 4:30 p.m., and attendees will have free time on Friday evening to choose their own dinner and entertainment options. The Pilots' baseball game is an available option that promises to be great fun! The baseball event will begin at 6:30 p.m., with an exciting matchup between the Peninsula Pilots and the Outer Banks Daredevils. Fireworks will immediately follow the game. Tickets are $5.00 per person and proceeds will help in the fight against NPC through the Kevin Eadie Foundation (www.helpkevin.org). An accurate count is required to reserve group seating at the ballpark and spots on the shuttle bus, which is being generously provided by the Peninsula Pilots. To reserve tickets for the game and seats on the bus, please contact the NNPDF Central Office by Friday, July 22, at nnpdf@nnpdf.org or 920-563-0930. Payment for tickets ($5 each) will be collected at the Family Conference. Please feel free to contact us if you have any questions or if we can be of any assistance. |
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Conference Schedule-at-a-Glance
Please feel free to contact us with any questions or concerns. [Mar 29, 2011 mem]
(Last year's conference info below) |
18th Annual NNPDF Family Support and Medical Conference
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Ground Transportation to/from Airport | Airport shuttle bus service is available to and from the Delta Chelsea Hotel, with one-way fare for $21.95, and roundtrip for $36.25. Save 10% by booking shuttle tickets online in advance at www.torontoairportexpress.com . The shuttle runs every 30 minutes in the morning and every 20 minutes in the afternoon. Cab fare from the airport to the Delta Chelsea runs about $55.00. A combination bus and subway option is also possible, but the travel time is approximately one and a half hours (one-way) and involves changing trains once and a ten minute walk (with luggage). |
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Important Dates and Deadlines | Passport Requirements - Allow sufficient time! Click here for important information. |
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Registration Form | Mark your calendar and register for the conference using this registration form (pdf) or registration form (Word). Then book your flights and apply for or renew your Passport. |
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Hotel Reservations | Conference attendees must make hotel reservations directly with the Delta Chelsea. The special conference rate is $99 + taxes (Canadian) per night. Please click here for more details about booking your room(s) at the Delta Chelsea, including the Group Code to use for the special $99 room rate. |
| Helping Hand Stipend |
The Helping Hand Stipend is for NNPDF member families who need financial assistance to be able to attend the Family Conference. Please apply by June 15th. Application: (pdf) (Word) | |
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Toronto Tourism Information | To learn about the many exciting attractions and cultural opportunities Toronto has to offer, visit the See Toronto Now Web site. Toronto is a vibrant and extremely diverse city with something for every member of the family! |
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Passport Info | Travelers to Toronto from outside Canada, including those traveling from the U.S., will require passports. Visit the U.S. Department of State's Passport page for more information, and the Canadian government's site to ensure you are eligible to enter Canada. According to the U.S. Dept of State site, current passport processing times are about 4 - 6 weeks, but during busier times, such as the summer travel season, they encourage customers to use the expedited service for applications if the travel date is closer than 10 weeks away. |
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International Travel Tips |
These tips and links to further resources will help you plan your trip well, particularly for family members who have a chronic medical condition. Visit the Transportation Security Administration's Web site for more information including what you can carry onto your flight (prescription medications, oxygen, wheelchairs), etc. The U.S. Department of Transportation offers this publication titled New Horizons for the Air Traveler with a Disability. (No voltage converter is needed for curling irons, hair dryers, etc.brought to Canada from the U.S.) |
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Parking | Underground parking is available at the Delta Chelsea Hotel for a special rate of $20 (CAD) per day. For more details, click here. |
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Currency Exchange | There are several options for exchanging U.S. currency for Canadian. Using credit cards avoids the need for currency exchange, as the exchange is made by the credit card company. If you prefer to carry cash, it is advisable to exchange currency before traveling to Canada. (See more detailed information below.) Currency conversion tool |
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FAQs (Frequently Asked Questions) |
We've compiled this list of FAQs (Frequently Asked Questions) we hope will be helpful to you. If you have a question we haven't addressed, please don't hesitate to contact us. We will do all we can to be of assistance as you plan your family's trip to Toronto! Here is a Schedule-at-a-Glance for the 2010 Family Conference. |
18th Annual NNPDF Family Support and Medical Conference
Mark your calendar for August 5th - 8th, 2010, and start making plans to join us in Toronto for this informative and fun-filled family event! Registration packets with complete information were mailed out to NNPDF and CCNNPDF member families on May 14. If you have not received your conference packet, contact the NNPDF office, or access the registration packet here.
Conference registration form: (pdf) (Word doc)
Helping Hand Stipend application form: (pdf) (Word doc).
Conference Schedule-at-a-GlanceThe 18th Annual NNPDF Family Support and Medical Conference will be hosted by our neighbors to the north, the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) in the beautiful city of Toronto! Hotel/Conference Center
The site for the conference will be the downtown Delta Chelsea Hotel. The hotel offers Fully Accessible Rooms (19) and Modified Accessible Rooms (20) on a first-come, first-served basis. The special conference rate is $99 (CAD) per night rate (plus taxes and fees). Children age 6 and under eat free when staying with their parents at the Delta Chelsea, and children ages 7 to 12 eat for half price from the regular menu. In-room (wired) internet access is available for $13.95 per day, and there is free wireless access in the lobby and garden/restaurant.
Make reservations by calling 1-800-243-5732 (use Group Code GRS NNPDF when calling); or make reservations online (use Group Code GNPDF when booking online). When booking online, select from the dropdown menus as follows: Region - Central Canada; Province - Ontario; Destination -Toronto; Hotel/Resort - Delta Chelsea. Parking
Patrolled underground parking is available at the Delta Chelsea Hotel, at a special conference rate of $20 per day (CAD) (normally $28 per day), with 24-hour access. The $20/day (CAD) rate also applies to oversized vehicles, with a limited number of spaces available. Please note that the entry to the parking ramp has a height clearance limit of 5 feet, 6 inches. Vehicles taller than 5'6" will require an oversized parking space (vans with roof racks, campers, etc). Ground-level public parking is also available adjacent to the hotel on Gerrard Street, at a rate of $16 (CAD) per 12 hours.
Passport Required
Please note that travelers to Toronto from outside Canada (including the U.S.) will need passports. Be sure to allow plenty of time for passport processing. According to the U.S. Dept of State site, current passport processing times are about 4 - 6 weeks, but during busier times, such as the summer travel season, they encourage customers to use the expedited service for applications if the travel date is closer than 10 weeks away. If you have a current passport, be sure to check the expiration date and apply for renewal if necessary.
The U.S. Dept of State site advises that, if possible, you should renew your passport approximately nine months before it expires. See question #9 on this page for more details. If the additional cost of passports is a financial hardship for your family, please contact Nadine Hill at the NNPDF. Visit the U.S. Department of State's Passport page for more information, and the Canadian government's site to ensure you are eligible to enter Canada.Medical Equipment - Oxygen Supplies
Travelers who require oxygen supplies
should be able to work through their current oxygen provider to arrange the oxygen in Toronto through the network of suppliers, and the suppliers should be able to handle the necessary documentation. Arrangements should be made well in advance of travel.
Oxygen providers serving the Toronto area:
Proresp - www.proresp.com 1-800-563-8981
Medigas- www.medigas.com 1-866-446-6302 affiliated with Praxair in the US
Vitalaire- www.vitalaire.com 1-800-567-0202 affiliated with the Air Liquide Healthcare network Medigas and Vitalaire have information regarding travel on their Web sites. They suggest that arrangements for oxygen be made at least a month prior to international travel.
Currency Exchange
Remember that Canada's currency differs from U.S. currency, and the exchange rate varies daily. Using credit cards avoids the need to convert cash, as the conversion is handled by the credit card company. If you prefer to carry cash, convert your currency in advance, if possible. (Your home bank should be able to make the conversion or tell you where you can convert currency locally.) Currency may also be exchanged at Toronto Pearson Airport and at the Delta Chelsea front desk. Many retailers and restaurants in Toronto will accept U.S. currency, but may charge a fee or use an exchange rate not advantageous to the traveler. Do not plan to exchange currency at a bank in Canada, as most banks will only exchange currency for their own regular clients with ID, due to government regulations. Currency converter tool Transportation Options
Flights are available into Toronto Pearson International Airport (YYZ) (the main Toronto airport) and, from a limited number of U.S. cities, into the smaller Billy Bishop Toronto City Airport (YTZ) (also known as City Centre Airport). Flying into Billy Bishop Toronto City Airport requires a short ferry ride from the airport to the city.
Depending on your location, you may want to consider transportation other than just international flights. One of our members from the eastern U.S. has done a bit of early planning, and she discovered that taking a train to Toronto is more economical than flying, and for one family from the Midwest, flying into Buffalo, New York, and then taking a bus across to Toronto is a significant cost savings.
First Time Fundraiser ContestWin this
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| You can hold more than one fundraiser during the contest year (July 1, 2009 - June 30, 2010) to count toward your total. Be sure
to notify the NNPDF Office
that you are participating in the First Time Fundraiser Contest so your results are tracked.. The rewards of participating are great (even if you aren't the prize winner):
Everyone participating will be" First Timers" - so everyone has an equal chance at being the top fundraiser. Whether you raise $50 or $5,000, it all helps in the fight against Niemann-Pick Disease! |
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Conference Hosts
Tammy & Alan Vaughan and Lucy & Enio Liegghio will serve as family hosts for the 2010 conference in memory of their children, Alex Vaughan (NPC), Laura Vaughan (NPC) and Luke Liegghio (NPC), together with Sandra Cowie (ASMD) and family. Conference Planning
We are busy making plans for speakers and sessions to bring you all the latest information with regard to Niemann-Pick Disease. We are also seeking sponsors and in-kind donations to help defray the cost of the conference. If you have an idea for a potential sponsor or corporate donor, please email Tammy Vaughan, CCNNPDF Chair, or the NNPDF office.
Letter requesting sponsorship/donations.
Insurance Matters
An important part of your travel planning should include a call to your health insurance provider to see what coverage you will have when traveling. Your insurance may cover you as usual, or you may be advised to purchase an additional “rider” or travel policy as a safeguard. To read the advice given by one U.S. health insurer, check out this Frequently Asked Questions (FAQs) page we've prepared for you.
More Information
Watch this Web page for more information about the Family Conference as details develop. Complete registration packets were mailed to NNPDF and CCNNPDF member families May 14. Check out this Conference Schedule-at-a-Glance.
To see and learn more about all that Toronto has to offer, please visit the "See Toronto Now" web site: http://www.seetorontonow.com/, and if you have specific questions, contact the NNPDF by email or by telephone at 920-563-0930. 2009 Seattle Conference Highlights
The 2009 conference in Seattle was hosted by the family of Karen & Gene Quandt, in honor of their son, Ty (Age 12, NPC). The following link includes two fun slideshow recaps and a link to the memorial video from that event. http://www.nnpdf.org/familyservices_03.html
[May 19, 2010 mem]
| (2009 conference info below) |
"It's Raining Hope in Seattle"
17th Annual NNPDF Family Support and Medical Conference
Thursday, July 30th - Sunday, August 2nd, 2009
Seattle, Washington
Doubletree Guest Suites
2009 Family Conference Slideshow and PhotosClick here to view a slideshow of photos taken at the recent fun (and informative!) 2009 Family Support and Medical Conference. And here are many MORE great photos from the conference! (Many thanks to volunteer Mandy for these photos!) On Thursday evening at the conference, a special memorial tribute was shown during the "Light of Hope" candlelighting ceremony. (Thank you, volunteer Morgan, for this meaningful contribution.) If you were unable to join us for the conference, be sure to also check out the conference agenda linked below, to see what you missed. [Aug 6, 2009 mem] |
Conference Agenda
Hosts for the NNPDF 2009 Family Conference, Karen and Gene Quandt, together with conference team members, are busy planning an event to address the needs of our families, including the opportunity to learn the latest in research and treatments for NPD.
Conference attendees will also have the opportunity to see such attractions
as the Space Needle, the beauty of the Puget Sound Region, the majestic
Cascade Range and the towering, volcanic Mount Rainier. Mark your calendar and make plans to join us in Seattle this summer! NNPDF
Member Families -- Watch your Mailboxes -- Family Conference Packets have been mailed out! The packets contain conference details, registration forms, hotel information, airline discount information, tourist attractions, etc.
You can also access the packet materials via the links below: 2009 Family Conference Invitation Letter 2009 Family Conference Information 2009 Conference Registration Form 2009 Helping Hand Stipend ApplicationPlease return your completed registration forms to the NNPDF by July 1st. The mailed packet also includes an NNPDF Membership Form. We will be updating our Family Directory this year, and we are asking every family to fill out a new membership form so we can be certain we have your latest contact information. (Membership in NNPDF is free and enables us to keep you up-to-date with all the latest developments.) You can also access the Membership Form here: 2009 NNPDF Membership/Family Directory Update Form Make your hotel reservations with Doubletree Guest Suites today, as part
of the NNPDF block of rooms. Use Group Promo Code NIE to receive the group rate.
Click here to make your reservations at Doubletree Guest Suites - Seattle
Midwest Express Airlines
The NNPDF has chosen Midwest Airlines as one of our preferred carriers with a 6%-10% discount for our attendees. If you book 60 days out you will receive a 10% discount ~ within 60 days a 6% discount. It is a highly-rated airline with plenty of amenities. Three convenient options for booking your flights on Midwest:
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Promo/Tour Code Number: CMZ7188 |
Alaska Airlines
Alaska Airlines has also been chosen as a preferred carrier. Alaska Airlines offers a 5% discount off normal fares and 10% off full coach or first-class fares. Space must be booked in the same class of service as the fare being discounted. All fare rules and blackout dates apply. Fare discounts are valid on Alaska and Alaska/Horizon combined itineraries only.
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Promo Code Number: ECCMB0981 |
Conference Agenda/Schedule
The agenda for the 2009 Family Conference is being developed, focusing on medical and research issues. To see the agenda click here. Conference registration will begin at 7:00 p.m. on Thursday, July 30th, 2009, and the closing ceremonies and family celebration will be Saturday evening, August 1st, 2009, from 8:00 until midnight. Families will then have Sunday, August 2nd, to gather informally or go see the sights of Seattle.
Our "First Time Fundraiser Contest" continues for the 2009 Conference.
The rules are simple:
- This must be your first fund raising event for NNPDF Only events held after June 30, 2008, will be counted Results and receipts must be turned into the Foundation by July 1, 2009
- NNPDF Board members, officers, and their relatives are not eligible
The rewards of participating are great (even if you aren't the prize winner):
- A sense of accomplishment at doing something you may have thought impossible Moving the fight against Niemann-Pick Disease forward The top fundraiser will be recognized at the Family Conference and in the Newsletter
- The top fundraiser will receive a special prize (to be announced later)
Everyone participating will be" First Timers" - so everyone has
an equal chance at being the top fundraiser.Whether you raise $50 or $5,000, it all helps in the fight against Niemann-Pick.
If you need help getting started, contact Nadine
Hill
[May 20, 2009 nmh]