NNPDF Family Support and Medical Conference
18th Annual NPD 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 |
"Save the Date" cards mailed -- April 1st
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Registration Form | Mark your calendar and register for the conference using this registration form (pdf) or registration form (Word) . |
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Hotel Reservations |
Conference attendees must make hotel reservations directly with the Delta Chelsea . The special conference rate is $99 + taxes 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. |
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Helping Hand Stipend | The Helping Hand Stipend is for NNPDF and CCNNPDF 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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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. The U.S. Department of Transportation offers this publication titled New Horizons for the Air Traveler with a Disability . |
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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! |
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. We are preparing registration packets with complete information and will mail them out to NNPDF and CCNNPDF member families in May. In the meantime, for "early birds" who want to "get the jump" on planning, here is a conference registration form:
(pdf)
(Word doc)
; and here is the Helping Hand Stipend application form:
(pdf)
(Word doc)
.
T he 18th Annual NNPDF Family Support and Medical Conference will be hosted by 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.
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 travel.
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 will be mailed to NNPDF and CCNNPDF member families in May. In the meantime, 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.
/familyservices_03.html
[April 9, 2010 mem]
"It's Raining Hope in Seattle"
NNPDF 17th Annual 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.
Watch this site in the coming months for information about the 2010 NNPDF Family Support and Medical Conference so you can mark your calendar and book travel arrangements well in advance.
(Click here to see pictures from the 2008 Family Support and Medical Conference)
[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 Application
Please 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
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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
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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]