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NNPDF Family Support and Medical Conference

22nd Annual NNPDF Family Support and Medical Conference
San Francisco, CA
Thursday, July 31st ~ Sunday, August 3rd, 2014



Please note:  The NNPDF will be providing a complimentary, additional Burligame Shuttle on Friday night that is ADA accessible for our families who are traveling with loved ones with handi-cap accessible needs.

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Dear Friends and Families,

Welcome to 2014! A new year means a new Family Conference, and we're excited to announce that this year's conference will be held in San Francisco, CA in summer 2014! Tara Patterson-Martin and Rebecca Spencer-White have kindly agreed to host this year.

San Francisco Bay ~ San Mateo County

San Mateo County, gateway to San Francisco, is graced with natural scenic beauty, yet has all of the excitement of a cosmopolitan community.  With over 17,000 sleeping rooms and three large public meeting facilities, the San Mateo County area has it all.  San Francisco International Airport adds to the appeal and convenience of the area.

Ideally suited for conferences, long weekends and family vacations, San Mateo County fulfills the highest expectations of all types of visitors.  Already known for its sunshine, 90 miles of beaches and proximity to San Francisco, the area has earned a reputation as a culinary tourism destination, due to its incredible, fresh produce, seafood, locally produced cheese, wine and microbrews.

Cultural activities involving the arts, music, history and entertainment are found throughout the area. Movie buffs will find filming locales from Chasing Mavericks and numerous other feature films.

For the ultimate in shopping, we offer several vibrant downtown areas, as well as four major shipping centers and numerous pockets of unique stores and boutiques.

Conference attendees and families all find something of interest there.  Nature lovers enjoy whale watching and migrating elephant seals at Año Nuevo State Reserve. Museum lovers flock to the Hiller Aviation Museum, CuriOdyssey, Cantor Arts Center and the San Mateo County History Museum.

The opportunities are endless!  Come and discover the best of the San Francisco Bay ~ San Mateo County during the 22nd Annual National Niemann-Pick Disease Foundation Family Support and Medical Conference!

As we get closer, more information will be released. Keep your eyes on this page, as well as on the Newsline for the latest updates!

~2014 Conference Agenda at a Glance~

calendar graphic Important Dates and Deadlines

When: Thursday, July 31st- Sunday, August 3rd, 2014
Conference Registration deadline -- June 30th, 2014
Helping Hand Stipend Application deadline -- June 30th, 2014
Hotel Reservation deadline --
July 9th, 2014
First Time Family Fundraiser deadline -- June 30, 2014

* Conference Packet  

form graphic Conference
Registration Form

Banner

Register Online!

Visit the link above to register for the conference online. You can choose multiple tickets if your attendees are a mix of immediate, extended familes as well as NPD affected individuals.  You can also choose to pay by credit card upfront, or via check!  We ask only that checks be provided by the time you attend the conference or upon arrival at the registration table.


If you prefer, you can still fill out paper forms. Please complete the registration form and return it with the conference registration fee by Monday, June 30th, 2014.  (The conference registration fee is waived for individuals with a diagnosis of NPD and children under 5 years of age)  

          Registration Form (PDF)         Registration Form (Fillable Word)

Volunteer Volunteer!

Every year, our volunteers play an integral role in making this conference such a valuable (and fun!) experience for families affected by Niemann-Pick Disease.  We appreciate your willingness to give of your time and talents to make this conference a success!

Volunteer Form (PDF)         Volunteer Form (Fillable Word)

Register Online to Volunteer!
Registration fees still apply to volunteers if immediate family, 5-17 year children, or extended family members.

handshake graphic Helping Hand Stipend

The Helping Hand Stipend is for NNPDF registered families who need financial assistance to be able to attend the Family Conference.  Please apply by June 30th, 2014. The deadline for reimbursements are due by September 15th, 2014.

   Helping Hand Stipend (PDF)       Helping Hand Stipend (Fillable Word)  

hotel graphic Hotel Reservations

The Embassy Suites San Francisco Airport - Waterfront, 150 Anza Blvd (650-342-4600) Burlingame, CA; has been selected for the 2014 Family Conference. The special conference rate is $149.00 for 2 adults per night (+ Tax and fees = $167.33) with a NNPDF subsidized credit per night of $22.46 upon checkout for a total of $144.87 per night

  • Rooms at the above rate include 2 adults and up to 4 children. Each additional adult in the room will be charged an additional $20 per night to cover breakfast and the Manager's Reception gathering.
  • Children (0-17 years) are free.
  • Any NPC adult on-set family member will be exempt from the $20.00 fee.  Please contact the NNPDF Central Office for assistance. nnpdf@nnpdf.org or 920-563-0930.

*Special Rate Parking: $16.00 per day self parking. (normally $21.00 for parking)


Embassy Suites Online Hotel Registration

~Special NNPDF Hotel Rate Expired~
July 9th, 2014

Didn't book your hotel room in time to get the NNPDF special conference rate?  Contact the NNPDF Central Office at 920-563-0930 for assistance.


Amenities included in the special NNPDF contracted rate:
*Complimentary full cooked to order breakfast each morning (Mon-Fri, 6:00AM to 9:00AM / Sat and Sun 7:00AM to 10:30AM).  

*Complimentary beverages and snacks at the evening Manager's Reception (5:30PM to7:30PM).

Complimentary shuttle service to and from the San Francisco International Airport and SFO BART station.

*Complimentary use of Business Center.

*Complimentary use of indoor pool and workout room.

Hotel Main Level Map

h Airline

1. San Francisco International Airport (SFO) has free shuttle from airport to Embassy Suites hotel and is about 4 miles from the hotel. Driving Directions

2. Oakland International Airport (OAK): does not have free shuttle from airport to hotel and is 28 miles away from hotel. Driving Directions

bus Ground Transportation


Transportation to and from hotel
Train; Bus; Taxi; Car Rentals

The Hotel offers complimentary shuttle service to and from the San Francisco International Airport and SFO BART Station.

Click HERE for the SFO Shuttle Information and Times! 
*NEW*

The City of Burlingame provides complimentary shuttle to downtown Burlingame (for dinning, shopping and night life). 

Click HERE for the City of Burlingame Complimentary
Shuttle Schedule

*NEW*

All Public Transportation Links
Getting Around San Mateo County

Trolley San Francisco Tourism Information

To learn about the many exciting attractions and educational opportunities Baltimore Inner Harbor has to offer, visit the City of Burlingame web site or the San Mateo County Convention and Visitors Bureau.

Also, check out 50 Things to Do with Kids in Burlingame, CA & 136 Free and Cheap Things to Do in Burlingame, CA!

To start planning your trip, below are some travel guides (PDF files) that you may find helpful!

San Mateo County Travel Guide        Access Guide for the Disabled

Restaurant & Emergency Listings

certificate First-Time Fundraiser Contest

Since 2002, the Foundation has held an annual "First-Time Fundraiser" contest as a way to encourage and recognize families who have taken their first steps in raising funds in support of the Foundation.

The grand prize winner receives a free hotel room for the three nights of the Family Conference. See the below for more information on eligibility.

*If you are in the running for the First-Time Fundraiser Contest, please do not wait to make your hotel reservations -- if you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference. Make your hotel reservations now to avoid disappointment.

jet airliner

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. 
Also, visit the Transportation Security Administration's Web site for 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.
Question mark graphic 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 Baltimore!  

Exterior View of Embassy Suites San Francisco Airport - Waterfront

The Embassy Suites - San Francisco Airport ~ Waterfront

Online Hotel Registration Now Open!

Embassy Suites San Francisco Airport-Waterfront proudly presents a modern redesign of all Public Space (remodeled as of summer 2013) and each Guest Suite (to be completed by summer 2014). This remarkable renewal celebrates the 25-year prominence of our full-service hotel and its location adjacent to the San Francisco Bay.

The hotel’s architecture and interiors draw elements from the traditional Spanish mission style. The redesign brings a contemporary character for today’s guests while maintaining the charm & distinction of the property.

g


Overnight guests enjoy a spacious, Two-Room Suite, our complimentary Evening Reception offered nightly and a free, full, cooked-to-order breakfast served in our Atrium.

“New American” dining is offered all day in our lounge. Or, join us for dinner at Grille One Fifty. Also, our friendly & professional catering staff is on-site to assist in planning meetings & events held in our boardrooms or ballrooms.

Embassy Suites San Francisco Airport-Waterfront is ideally located in Burlingame, California, just 2 miles from SFO Airport. A complimentary shuttle is provided to the airport, Bay Area Rapid Transit (BART) & Cal-Train for easy access to downtown San Francisco and the entire Bay Area.


First-Time Family Fundraising Contest

Since 2002, the Foundation has held an annual “First-Time Fundraiser” contest as a way to encourage and recognize families who have taken their first steps in raising funds in support the work of the Foundation.  The grand prize winner receives a free hotel room for the three nights of the Family Conference.

Contest rules are simple:

  • Entrants must be first-time fundraisers.

  • Fundraising results & receipts must be submitted to the NNPDF Central Office by June 30th, 2014.

  • The 2014 contest year runs from July 1, 2013 —June 30, 2014.  (Events must have been held during this time period.)  First-Time Fundraisers may have hosted more than one event during that timeframe, with proceeds from all events in that timeframe counting toward the entrant’s total.

  • NNPDF board members, employees and their relatives are not eligible to participate.

  • The First-Time Fundraiser who raised the most money for NNPDF wins the grand prize — three free nights at the Sheraton for the Family Conference! 

If you are in the running for the First-Time Fundraiser Contest, please do not wait to make your hotel reservations —  make your hotel reservations now to avoid disappointment.  If you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference (July 31st, August 1, & 2).

Fundraising is vital for moving research forward.  If you have been thinking about fundraising, this is the time to jump in.  The NNPDF offers a Fundraising Packet, a Guide to Getting Media Coverage, and support to help you get started. 

Contact the NNPDF at nnpdf@nnpdf.org or 920-563-0930 for more information or assistance.


*Note: The Foundation Central Office will be sending out more information as we continue to develop the conference plans ~ in the interim, note the dates in your family calendars and begin planning your trip to beautiful San Francisco, CA

 

[April 4th, 2014 ~ blg]


21st Annual NNPDF Family Support and Medical Conference
"Harbor of Hope - Believing in Tomorrow "
Baltimore, MD
August 1st - 4th, 2013

Save the Date!

Baltimore, Maryland ~ Inner Harbor

The ideal location of Sheraton Inner Harbor Hotel offers convenient access to all the great Inner Harbor attractions and events in downtown Baltimore. Just outside the doors of our Inner Harbor hotel you'll find exciting waterfront activities, captivating museums for the family, charming boutiques and romantic restaurants. Discover Baltimore's most picturesque neighborhood and enjoy all the Inner Harbor attractions from the prime location of Sheraton Inner Harbor Hotel.

Share in the stunning scenery of the Baltimore Inner Harbor with a boating adventure and learn about the city's historic sights and sounds.

Then explore the world-class National Aquarium where you can see more than 16,000 creatures, watch a memorable dolphin show and even walk through a rain forest! Catch a Baltimore Orioles game with friends at Camden Yards or an action-packed football game at M&T Bank Stadium. Stroll along Harborplace & The Gallery in the heart of the Inner Harbor, offering over 100 shops and restaurants, plus live seasonal entertainment on the waterfront. Connect with your kids at the interactive Maryland Science Center or Port Discovery Children's Museum. When you stay at Sheraton Inner Harbor Hotel, you'll be just steps away from all the vibrant Baltimore Inner Harbor attractions and events.

~2013 Conference Agenda at a Glance~

calendar graphic Important Dates and Deadlines

When: Thursday, August 1st - Sunday, August 4th, 2013

Conference Registration deadline -- Wednesday, July 10, 2013

Helping Hand Stipend Application deadline -- Wednesday, July 10, 2013

Hotel Reservation deadline -- Wednesday, July 17, 2013 *~Updated*~

First Time Family Fundraiser deadline -- Sunday, June 30, 2013

INPDA 2013 Special Guests

This year the NNPDF is pleased to also be hosting the third meeting of the International Niemann-Pick Disease Alliance (INPDA")!  The foundation will welcome INPDA attendees from 16 countries around the WOLRD who all have the same focus ~ that we WILL Persevere in our Quest for a CURE for Niemann-Pick Disease!

*INPDA introductory orientation will start on Thursday afternoon and INPDA meetings conclude on Sunday afternoon.  More details to follow.

* Conference Packet  

2013 Family Conference Registration Packet (PDF)

*Hard copies of Conference Packets will be mailed out shortly

form graphic Conference
Registration Form
Please complete the registration form and return it with the conference registration fee by Wednesday, July 10th, 2013.  (The conference registration fee is waived for individuals with a diagnosis of NPD and children under 5 years of age)  

                  Registration Form (PDF)         Registration Form (Fillable Word)
handshake graphic 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 July 10th, 2013. The deadline for reimbursements are due by September 15th, 2013.

         Helping Hand Stipend (PDF)       Helping Hand Stipend (Fillable Word)  

hotel graphic Hotel Reservations

The Sheraton Inner Harbor , 300 South Charles Street, (800-325-3535) Baltimore, MD; has been selected for the 2013 Family Conference. The special conference rate is $119 per night, plus tax & fees (total $139.65 USD per night). 

To make your NNPDF Sheraton Inner Harbor Reservation online please visit the our NNPDF Reservation Page.

bus Ground Transportation


Airport Options; Transportation to and from hotel; Train; Bus; Taxi; Car Rentals

Sheraton List of Transport      Lightrail       Charm City Circulator    Water Taxi

Lightrail Directions from Baltimore Washington Intl Airport to Hotel

Getting to Baltimore

*Self parking at hotel is $21.20 for conference attendees.

Crab Baltimore Tourism Information

To learn about the many exciting attractions and educational opportunities Baltimore Inner Harbor has to offer, visit the Baltimore’s Visitors Center or Visit Inner Harbor.  

Also, check out 50 Free Things to Do in Baltimore!

certificate First-Time Fundraiser Contest

Since 2002, the Foundation has held an annual "First-Time Fundraiser" contest as a way to encourage and recognize families who have taken their first steps in raising funds in support of the Foundation.

The grand prize winner receives a free hotel room for the three nights of the Family Conference. See the below for more information on eligibility.

*If you are in the running for the First-Time Fundraiser Contest, please do not wait to make your hotel reservations -- if you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference. Make your hotel reservations now to avoid disappointment.

jet airliner

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.  Also, visit the
Transportation Security Administration's Web site
for 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.
Question mark graphic 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 Baltimore!  

 

Sheraton Innter Harbor

 

Greg Crawford, Dean of Notre Dame College of Science, will be riding from Los Angeles, Calif., to Baltimore, Md., arriving in time for the National Niemann-Pick Disease Foundation 21st Annual Family Support and Medical Conference.

Funds raised from this event will go to the University of Notre Dame Michael, Marcia and Christa Parseghian fund for NPC research.

Visit the Newsline for more details.

Dean Greg Crawford


First-Time Family Fundraising Contest

Since 2002, the Foundation has held an annual “First-Time Fundraiser” contest as a way to encourage and recognize families who have taken their first steps in raising funds in support the work of the Foundation.  The grand prize winner receives a free hotel room for the three nights of the Family Conference.

Contest rules are simple:

  • Entrants must be first-time fundraisers.

  • Fundraising results & receipts must be submitted to the NNPDF Central Office by June 30th, 2013.

  • The 2013 contest year runs from July 1, 2012 —June 30, 2013.  (Events must have been held during this time period.)  First-Time Fundraisers may have hosted more than one event during that timeframe, with proceeds from all events in that timeframe counting toward the entrant’s total.

  • NNPDF board members, employees and their relatives are not eligible to participate.

  • The First-Time Fundraiser who raised the most money for NNPDF wins the grand prize — three free nights at the Sheraton for the Family Conference! 

If you are in the running for the First-Time Fundraiser Contest, please do not wait to make your hotel reservations —  make your hotel reservations now to avoid disappointment.  If you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference (Aug. 1, 2, & 3).

Fundraising is vital for moving research forward.  If you have been thinking about fundraising, this is the time to jump in.  The NNPDF offers a Fundraising Packet, a Guide to Getting Media Coverage, and support to help you get started. 

Contact the NNPDF at nnpdf@nnpdf.org or 920-563-0930 for more information or assistance.


*Note: The Foundation Central Office will be sending out more information as we continue to develop the conference plans ~ in the interim, note the dates in your family calendars and begin planning your trip to the beautiful Inner Harbor of Baltimore, Maryland.

[Feb 21, 2013 blg, UPDATED 07/05/2013 blg]


20th Annual NNPDF Family Support and Medical Conference
"Where Hope and Harmony Unite"
Nashville, Tennessee
August 16 - 19, 2012

boat on the water

2012 Conference Information Packet            Registration Form

Helping Hand Stipend Application Form         Hotel Reservations

Frequently Asked Questions (FAQs)             Nashville Tourism Info

~Family Conference Group Photo~             ~Photos from the Conference~

The 20th Annual NNPDF Family Support and Medical Conference will be held from Thursday evening, August 16, until Sunday, August 19.  The conference site will be the beautiful Sheraton Music City Hotel, 777 McGavock Pike, in "Music City," Nashville, Tennessee.  Reserve your room at the Sheraton online -- special Family Conference room rate link

Mark your calendar and start planning now, as the Family Conference is your best opportunity to meet with other NNPDF families, as well as top medical and research experts, to learn the latest news and share in the NNPDF family network of support. 

For hotel reservations call Sheraton at 888-627-7060 and note that you are with the National Niemann-Pick Disease Family Conference, or make your reservations online:   Hotel reservations link    www.sheraton.com/musiccity  The group conference rate is $109 per night, plus 15.25% tax, plus a $2.50 per night city assessment (total $128.12 per night).  The group block will be held only until July 16th.

Bookmark this page and visit often, as more information about the Family Conference will be posted as it develops. In the meantime, check out all Nashville has to offer at the Nashville Convention and Visitors Bureau. 

calendar graphic Important Dates and Deadlines

First-Time Fundraiser Contest deadline -- Monday, July 2, 2012

Helping Hand Stipend Application deadline -- Friday, July 13, 2012

Conference Registration deadline -- Friday, July 13, 2012

Hotel Reservation deadline -- Monday, July 16, 2012

form graphic Conference
Registration Form
Please complete the registration form and return it with the conference registration fee by Friday, July 13, 2012.  (The conference registration fee is waived for individuals with a diagnosis of NPD.)  2012 Conference Information Packet    2012 Registration form
handshake graphic 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 July 13th. 
2012 Helping Hand Stipend Application form
hotel graphic Hotel Reservations

The Sheraton Music City Hotel, 777 McGavock Pike, Nashville, has been selected for the 2012 Family Conference. The special conference rate is $109 per night, plus 15.25% tax, plus a $2.50 per night city assessment (total $128.12 per night). When making reservations, be sure to request the special NNPDF Family Conference room rate.  The group block will be held only until July 16th, or until the block is filled, whichever comes first, so don't delay!    Hotel reservations link

bus Ground Transportation

The Sheraton Music City Hotel provides complimentary shuttle service from the airport to the hotel and back, and to and from locations in a 3-mile radius of the hotel.  To arrange a shuttle ride from the airport, visit the customer service kiosk on the ground transportation level in the Airport Terminal.

For travel around the city, check out the Music City Circuit busline or this list of alternate transportation options.   Getting Around Nashville by Taxi article

Cowboy boots Nashville Tourism Information To learn about the many exciting attractions and educational opportunities Nashville has to offer, visit the Nashville Convention and Visitors Bureau at www.visitmusiccity.com. 
jet airliner

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.  Also, visit the
Transportation Security Administration's Web site for 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.
Question mark graphic 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 Nashville!  

 

Nashville logo

 

(Images courtesy of Nashville Convention and Visitors Bureau.)

[Mar 19, 2012 mem; May 18, 2012 mem; June 4, 2012 mem, Oct 30, 2012 blg]

 


 

(2011 conference info below)

19th Annual NNPDF Family Support and Medical Conference
July 28 - 31, 2011
Norfolk, Virginia

 See fun photos from the conference!

Slideshow #1  (approximately 12 minutes)

Slideshow #2  (approximately 3 minutes)

Family Conference Group Photo

Family Conference tag

Friday Night Peninsula Pilots Baseball Game Opportunity!

2011 Conference Schedule-at-a-Glance

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.   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.

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.

bus Ground Transportation to/from Airport The NNPDF has contracted with Orange Peel Transportation to provide shuttle service between Norfolk International Airport and the Sheraton Norfolk Waterside Hotel between Wed, July 27 and Sun, July 31only.  To arrange shuttle service contact Orange Peel in advance at 757-463-7500, or reserve online at www.orangepeeltransportation.com, using the group code "NNPDF." 

calendar graphic Important Dates and Deadlines

Helping Hand Stipend Application deadline -- June 15th 
First-Time Fundraiser Contest deadline -- June 30th
Conference Registration deadline -- July 1st
Hotel Reservation deadline -- June 27th

form graphic Registration Form Please complete the registration form and return it with the conference registration fee by Friday, July 1, 2011.  (The conference registration fee is waived for individuals with a diagnosis of NPD.)   
hotel graphic Hotel Reservations

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! 

handshake graphic 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. 
Sailboat Norfolk and Virginia Tourism Information To learn about the many exciting attractions and educational opportunities Norfolk has to offer, visit www.visitnorfolktoday.com.  For Virginia tourism info, visit www.virginia.org.
jet airliner

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.  Also, visit the Transportation Security Administration's Web site for 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.
car Parking 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.
Question mark graphic 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 Norfolk!  
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. 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); or 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


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.

Baseball batter

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.

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.

Conference Schedule-at-a-Glance

Please feel free to contact us with any questions or concerns.

[Mar 29, 2011 mem]


(2010 conference info below)

18th Annual NNPDF Family Support and Medical Conference
August 5 - 8, 2010
Delta Chelsea Hotel, Toronto, Ontario

2010 Conference Schedule-at-a-Glance    

Many attendees have posted photos from the conference to Facebook, and you can see over 300 photos shot by conference volunteer Nancy Kreuger at Snapfish.  (A free membership is required to view Snapfish albums.)  

Grand Rounds Information:  Aug. 5 (NPC)    Aug. 6 (ASMD)    Map

2010 Family Conference Logo
bus 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).
calendar graphic Important Dates and Deadlines

Passport Requirements - Allow sufficient time! Click here for important information.
"Save the Date" cards mailed -- April 1st
Helping Hand Stipend Application deadline -- June 15th 
First-Time Fundraiser Contest deadline -- June 30th
Conference Registration deadline -- July 1st (Conference registration packets were mailed out to NNPDF and CCNNPDF members on May 14.) 
Hotel Reservation - Special Conference Rate guaranteed until July 1st, 2010

form graphic Registration Form Mark your calendar and register for the conference. Then book your flights and apply for or renew your Passport.
hotel graphic Hotel Reservations

Conference attendees must make hotel reservations directly with the Delta Chelsea.  The special conference rate is $99 + taxes (Canadian) per night.

handshake graphic Helping Hand Stipend The Helping Hand Stipend is for NNPDF member families who need financial assistance to be able to attend the Family Conference. 
Toronto skyline graphic 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!
Passport graphic 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.
jet airliner 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.)
car Parking Underground parking is available at the Delta Chelsea Hotel for a special rate of $20 (CAD) per day. 
dollar sign and credit card graphic 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
Question mark graphic 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..

2010 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 Contest

Win this
Fabulous Family Fun Suite
for the 2010 Toronto Family Conference!

The rules are simple:

  • This must be your first fundraising event for NNPDF Only events held after June 30, 2009, will be counted Results and receipts must be turned in to the NNPDF by June 30, 2010
  • NNPDF Board members, officers, and their relatives are not eligible
Family Fun Suite
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):
  • 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, in the Newsletter and on the NNPDF Web site
  • The top fundraiser will be provided with this Family Fun Suite for the Family Conference in Toronto this August!

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!

If you need help getting started, contact Nadine Hill.

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

It's Raining Hope in Seattle

Thursday, July 30th - Sunday, August 2nd, 2009
Seattle, Washington
Doubletree Guest Suites

2009 Family Conference Slideshow and Photos

Click 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]


2009 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.                    

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.)

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.                                                                       

                                                                     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:

  • Online: visit www.midwestairlines.com and type the tour code (below) in the promo box  (bonus Midwest Miles offered  for online bookings) Phone: call Midwest at 800-452-2022 and provide the tour code to the reservations agent
  • Travel Agent: purchase ticket(s) through a travel agent, provide them with the tour code information or have them call  the Midwest reservations department.

Midwest Express logo

Promo/Tour Code Number: CMZ7188

Book your flight on Midwest Airlines

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. 

  • Online:  visit alaskaair.com and use Promo Code ECCMB0981

Alaska Airlines

Promo Code Number: ECCMB0981

Book your flight on Alaska Airlines



                                                                 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

You can hold more than one fundraiser during the year if you wish. Be sure to notify Nadine Hill at the NNPDF Office that you are participating in the First Time Fundraiser Contest so she can track your results.

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]

 

2008 NNPDF Family Support and Medical Conference