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NNPDF Family Support & Medical Conference


 

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24th Annual
NNPDF Family Support & Medical Conference

Thursday, August 11th ~ August 14th, 2016

 

2016 Family Conference Quick Links

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Deadline

IMPORTANT DATES AND DEADLINES:

CONFERENCE DATES:
Thursday, August 11th – Sunday, August 14th, 2016

FIRST-TIME FUNDRAISER CONTEST ENTRIES DUE:
Thursday, June 30th, 2016

“HELPING HAND” STIPEND APPLICATIONS DUE:
Friday, July 15th, 2016

CONFERENCE REGISTRATION FORMS & FEES DUE:
Friday, July 15th, 2016

HOTELS RESERVATIONS DUE:
Wednesday, July 20th, 2016

CONFERENCE REGISTRATION FEES:

fees

YOUR REGISTRATION FEE INCLUDES:
Thursday Evening Reception, Light Breakfast Friday, Lunch Friday,
Light Breakfast Saturday, Lunch Saturday & Saturday Gala Dinner.


Conference Registration

**PLEASE READ BEFORE REGISTERING ONLINE**

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ONLINE REGISTRATION

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, children & even volunteer.
ONLINE REGISTRATION PAYMENT OPTIONS:
CREDIT CARD:
Pay by credit card via your online registration
CHECK BY MAIL:
Make checks payable to:

NNPDF (please note “Family Conference Registration ” in memo)
Mail to:
NNPDF, PO Box 49, Fort Atkinson, WI 53538-0049

 * * * * * * * * * * * * * * * * * * * * * * * * * *

PAPER REGISTRATION FORMS

FILLABLE PDF REGISTRATION FORMS

If you prefer, you can still fill out paper forms. Please complete the registration form
and return it with the conference registration fee by Thursday, July 15th, 2016.
(The conference registration fee is waived for individuals with a
diagnosis of NPD and children under 5 years of age)

PAYMENT OPTION:

CHECK BY MAIL:

Make checks payable to:
NNPDF (please note “Family Conference Registration ” in memo)
Mail to:
NNPDF, PO Box 49, Fort Atkinson, WI 53538-0049

Speakers
 NNPDF Speaker Registration

If you have been invited by the NNPDF as speaker, or as a member
of the Scientific Advisory Board (SAB) who will be speaking,
please fill out the 
SAB and Speaker form provided below.

SAB/Speaker Form (Fillable PDF)


Volunteer

Volunteer Registration

Register Online to 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!

Once your registration form is recieved you will recieve a link
to select your volunteer times.

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

Volunteer Form (Fillable PDF)


HelpingHand

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 Thursday, July 15th, 2016.
Deadline for reimbursements are due by September 15th, 2016.

Helping Hand Stipend Application

Helping Hand Stipend Application (Fillable PDF)

Helping Hand Stipend (Online)


BostonDoubleTree

Hotel Reservations

Doubletree Boston North Shore

50 Ferncroft Road, Danvers, Massachusetts

RESERVATIONS: 1-800-222-8733
USE CODE NPF

Reservation Deadline: July 20th, 2016

 

Special Family Conference Hotel Rate: $128.46 per night

*The hotel room is $115.00 plus 11.70% /$13.46 (tax & fees per night) for a total cost to attendees of $128.46 per night.

The special discount rate is available for the conference and apron dates of Sunday, August 7th, 2016 through Tuesday, August 16th, 2016 (departure on Aug. 17th), based on availability.

SPECIAL NOTE: Massachusetts law prohibits alcohol being brought onto the property from the outside (including guest rooms).

 

* * * * * * * * * * * * * * * * * * * * * * * * * * 

 

Didn’t book your hotel room in time to get the
NNPDF special conference rate?

Contact the NNPDF Central Office at
877-287-3672 for assistance.

 

* * * * * * * * * * * * * * * * * * * * * * * * * *

 

The cost of each room includes the following:

  • Complimentary Wi-Fi in all guest rooms and meeting space.
  • Complimentary use of and access to Atlantis Sports Club with an extensive weight room, cardio room, fitness classes and indoor pool.
  • Complimentary cribs and roll-away beds*.
  • Mini-refrigerators are available at an extra cost of $25/per night.
    Please contact the NNPDF Central office for additional details.*
    *These items need to be reserved when you make your
    reservation as limited quantities are available.

Amenities and Services

Maps and Directions

DoubleTree Boston North Shore Floor Plan


Air Transportation2

Air Transportation

Boston Logan International Airport


Ground Transportation
Ground Transportation

Transportation to and from Hotel

Transportation Information for those that require ADA Assistance


Boston
Boston Tourism Information

To learn about the many exciting attractions and
educational opportunities the Boston area has to offer,
visit Boston Visitors Bureau or the Massachusetts Vacation websites.

* * * * * * * * * * * * * * * * * * * * * * * * * *

See below for the quick reference guide
“What to see and do in the Greater Boston Area”
to make finding things close to the hotel much easier!

What will you discover?

The area from Boston to Danvers where the
2016 NNPDF Family Support and Medical Conference will be held has
beaches, lighthouses, historic homes, museums and the best shipping and dining around!
This are is one that helped shape our nation’s history
and you can discover it all while you are visiting.

The Freedom Trail in Boston

Rebecca Nurse Homestead in Danvers

Derby Wharf Light Station in Salem

Boston Children’s Museum in Boston

Faneuil Hall Marketplace in Boston

Water Cruises in Boston & Salem

House of the Seven Gables in Salem

Salem Witch Museum in Salem

Endicott Park in Danvers

Old North Church in Boston

New England Aquarium in Boston

Peabody Essex Museum in Salem

Museum of Science in Boston

John F. Kennedy Library & Museum, Boston


Fundraising

NNPDF 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.

 

Contest rules are simple:

  • Entrants must be first-time fundraisers.
  • Fundraising results & receipts must be submitted to the NNPDF Central Office by June 30th, 2016.
  • The 2016 contest year runs from July 1, 2015 – June 30, 2016. (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 Loews for the Family Conference!

If you believe that your fund raising events and efforts may qualify you to be considered in the 2016 NNPDF Annual First-Time Fundraiser Contest, please be certain to contact the foundations Central Office to inquire as to your family’s eligibility. Also, PLEASE do not wait to make your hotel reservations — reserve your hotel reservations now to avoid disappointment in not being able to take advantage of the foundations contracted room rates. If you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference (August 11, 12, and 13, 2016).

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.

*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.


Travel Tips
Travel 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.


FAQ
FAQ 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 Boston!


ATTENTION: ASMD COMMUNITY ATTENDEES

****Special Activity for ASMD Adults****
“Understanding Biologic ERT Manufacturing”
Friday, August 12, 2016 12:00 (noon) to 4:30 pm

On Friday, August 12th, 2016, the adult ASMD community is invited to take a tour of the Sanofi/Genzyme Plant in Framingham, MA. This special tour will leave the DoubleTree Boston North Shore at 12:00 (noon) to travel to Framingham. While on the coach bus you will enjoy a boxed lunch and beverage provided by the hotel. After the tour you will be returned to the DoubleTree Boston North Shore. Arrival back at the hotel is dependent upon traffic. The cost for this activity, bus and lunch is $10.00 per person. Please sign up online here.

 

SANOFI_


NNPDF Family Conference Attendees

A Variety of Activities are being offered 
on Friday night, August 12, 2016

 

THE NNPDF PRESENTS
“Salem or Swim”

 

Salem at Night Tour:

Hop on a bus and travel to Salem for dinner on your own. Meet up with the group and take part in a guided tour of Salem at night! Enjoy a 90 minute tour whether rain or shine! Learn about the history and the mystery of Salem from our tour guide Susan Metzger of Hocus Pocus Tours.

Susan will capture the historic spirit of Salem’s yesteryear during this award winning 90-minute walking tour. Discover the truth about Salem’s infamous Witch Trial Hysteria. Experience the authentic story of Salem’s most notorious murder. Encounter how Nathaniel Hawthorne spent much of his life trying to escape the legacy of a hanging judge. Learn about the Salem locations used in the blockbuster movie Hocus Pocus.

Then back on the bus and return to our hotel. The cost for the Salem tour is $23.00 per person to help cover the cost of the bus plus your ticket for the tour. If you are interested in taking the bus to Salem and explore on your own the cost will be $10.00. Just a quick note: Salem is not very handicapped accessible due to the cobblestone sidewalks. The tourism center also states that many of the tourist sites close at 5:00 pm. For information on Salem please go to www.salem.org. Please register here.

 

Swim ~ Coco Key Water Park:

Go to CoCo Key Water Park located inside the DoubleTree Boston North Shore. You may purchase tickets at a reduced rate of $20.00/per person/per day at the front desk of CoCo Key. Not only can you purchase a ticket for Friday night but any day during your stay you can purchase a ticket for the same amount. CoCo Key is handicap accessible and will provide a fun time for all! The regular cost is $45. The Park is open from 10am until 9pm.


As we get closer, more information will be released via e-Newsletter, the NNPDF website and social medias. So keep your eyes on your e-mail, this NNPDF Family Conference page, as well as the NNPDF Blog for the latest updates.

 

06/20/2016 jjb