NNPDF Family Support and Medical Conference

24th Annual NNPDF Family Support and Medical Conference
Thursday, August 11th ~ August 14th, 2016

"Staying STRONG in Boston!"

Family Conference

2016 Family Conference Quick Links
hotel reservations



Thursday, August 11th - Sunday, August 14th, 2016

Thursday, June 30th, 2016

Friday, July 15th, 2016

Friday, July 15th, 2016

Wednesday, July 20th, 2016



  Thursday Evening Reception, Light Breakfast Friday, Lunch Friday,
Light Breakfast Saturday, Lunch Saturday & Saturday Gala Dinner.

family conference  


Conference 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.


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




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)


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


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 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)


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)

double tree

Hotel Reservations

Doubletree Boston North Shore
50 Ferncroft Road, Danvers, Massachusetts

RESERVATIONS:  1-800-222-8733

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 Transportation

Boston Logan International Airport


Ground Transportation

Transportation to and from Hotel

Transportation Information
for those that require ADA Assistance


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.

We also created a quick reference guide
"What to see and do in the Greater Boston Area"
to make finding things close to the hotel much easier!


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. See 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.



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.


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!  


****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 at



NNPDF Family Conference Attendees are
being given the opportunity to a variety of options
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 Please register online at

Swim ~ Coco Key Water Park
coco key

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


What to See and Do in the
Greater Boston Area

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 area 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

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



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 the work of the Foundation.  The grand prize winner receives a free hotel room at the Doubletree Boston North Shore for the three nights of the 2016 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 or 920-563-0930 for more information or assistance.


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 Newsline for the latest updates.