2016 FC Packet FINAL wCover

Staying in Boston!

NATIONAL NIEMANN-PICK DISEASE FOUNDATION

24TH ANNUAL

&Family Support

Medical Conference

AUGUST 11TH thru AUGUST 14TH, 2016

DOUBLETREE BOSTON NORTH SHORE

Danvers, Massachusetts

The NNPDF presents the 24th Annual
Family Support & Medical Conference

Dear Friends and Families of the NNPDF, June 2016

The National Niemann-Pick Disease Foundation (NNPDF) is pleased to invite you to the 24th
Annual NNPDF Family Support and Medical Conference in Boston (Danvers) Massachusetts,
August 11th to August 14th, 2016, at Doubletree Boston North Shore. Please mark your calendar
and make plans now to join us for this informative family support and medical conference.

Since its inception, throughout history and into recent times, the founding fathers and residents of
Boston have had to be Strong . The families of the NNPDF have consistently shown strength as they
persevere against Niemann-Pick Disease. With that in mind, the NNPDF knew that the greater
Boston area would be a fitting backdrop to “Staying Strong in Boston” for our 24th Annual NNPDF
Family Support and Medical Conference.

As the largest NPD patient advocacy foundation world-wide, the annual NNPDF Family Support
and Medical Conference is your best opportunity to learn of the latest in medical care, clinical trials
and on-going research information directly from prominent researchers, doctors, clinicians and
scientists who work directly with Niemann-Pick Disease and our NPD patient community. In
addition, presentations on research updates pertaining to the work currently being accomplished
around the globe towards future clinical trials will be offered.

More importantly, the NNPDF Annual Family Conference allows you to personally meet and foster
connections with other families affected by Niemann-Pick Disease. Nothing compares to the
opportunity to meet face-to-face with those who are dealing daily with challenges similar to your
own. Our family membership often indicate that the highlight of the conference is meeting and
reconnecting with other NPD families, then building upon these bonds as a result of this shared
experience.

The NNPDF Family Conference Planning “Team” is working diligently to put together an agenda
which includes the latest in research and clinical trial news, medical and care-giving support,
networking opportunities and fun family activities.

Boston offers a wide-range of recreational and tourist opportunities for the entire family. With so
much to see and do, you may want to plan your conference trip to include a couple of extra days to
take advantage of all the area has to offer. The NNPDF Family Conference special hotel rates are
available three days prior to, and three days following the conference, allowing you to expand your
family travel plans.

2016 NNPDF Family Support & Medical Conference

While touring possible hotel options in and around the Boston area, the Doubletree Boston North
Shore in Danvers stood out as a hotel that would provide all of our NNPDF families and guests a
comfortable stay, meet our specific group needs and offer all the opportunity to experience
amenities galore.

The NNPDF Central Office (CO) has developed On-line Registration and “Helping
Hand” Stipend links & forms to streamline your registration process and assist in
your trip planning. Visit the Family Conference Website page for access to these
links at www.nnpdf.org. Of course, you are still welcome to complete the enclosed
forms if you prefer or contact the NNPDF CO should you have any questions.

We have prepared this packet of information regarding the conference especially for you:

 Including a basic conference schedule outline and registration deadlines
(see enclosed Conference Schedule-at-a-Glance sheet);

 Information about the Childcare/Young Adult Activity Room (CAR);

 The First-Time Fundraiser Contest;

 The Foundation’s “Helping Hand” Stipend;

 Hotel details and amenities;

 Greater Boston area attractions, resources, and travel tips.

Please read through the packet, complete and return your conference registration form and
registration fees by July 15th. Helping Hand Stipend applications are due July 15th. Please
note that the block of hotel rooms at the special conference rate will be held only until
July 20th, 2016 or until the block is filled, whichever occurs first. If you prefer, use the handy time
saving on-line registration and “Helping Hand” Stipend links located at www.nnpdf.org.

As always, please don’t hesitate to contact the NNPDF Central Office if you have any questions or
concerns regarding the Family Conference. We are here to help. Call 920-563-0930 or toll-free
877-287-3672; or email [email protected] . Please visit our special NNPDF Family Conference web
page at: hwww.nnpdf.org/familyservices_03.html for updated conference information, as details are
added to the page frequently.

The NNPDF staff are here if you have questions and we look forward to welcoming you to the Boston
area this summer!

STAYING STRONG,

Nadine M. Hill Chris Klauer

Nadine M. Hill Chris Klauer
NNPDF Executive Director Family Services & Marketing Coordinator

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2016 NNPDF Family Support & Medical Conference

Conference Deadlines

First-Time Fundraiser Contest Entries Thursday, June 30th, 2016

“Helping Hand” Stipend Applications Friday, July 15th, 2016
Conference Registration Forms & Fees Friday, July 15th, 2016

Hotel Reservations (make directly with the The block of rooms will be held until
Doubletree Boston North Shore – Wednesday, July 20th, or until sold out,
see pages 5 & 6 for details) whichever comes first. Please use the code NPF.

NOTE: (Handicap-accessible rooms will be We recommend you make your room
filled on a first-come, first-served basis.) reservations as soon as possible!

Conference Registration Fees

Immediate Family & Caregivers Registration $75.00
Children Attending (5-17 years) $50.00
NPD –Affected Individuals FREE
$100.00
Extended Family & Friends
NPD Medical Professionals FREE
Speaker/SAB/Fellow $450.00

Pharma & Corporate Representatives

Childcare/Young Adult Activity Room (CAR)

Complimentary care and activities for children and young adults of all ages will be provided during
conference sessions (with breaks for lunch) for all families. The volunteer childcare/activities staff
will NOT administer medications or give feedings.

The volunteers staffing this service are
committed to ensuring that your
children, both NPD affected and their
siblings, along with our young adult
NPD family members, are in a safe and
fun-filled environment. The CAR offers
a variety of activities, games, crafts,
videos, friendship and FUN. If your
children or young adult enjoys a
particular activity or game, please feel
free to bring it along to share with their
friends in the activity room.

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2016 NNPDF Family Support & Medical Conference

Commemoration

The “Light of Hope” Candle Lighting Ceremony and
Commemoration, in memory of all the precious loved ones we have
lost to NPD since our last gathering, will be held on Thursday
evening after the registration, welcome reception, introductions
and short program. Complimentary adult supervision will be
available during this time in the childcare/young adult activity room
(CAR). Families are invited to bring photos, memory books, etc., of
their loved one with NPD to share with other families in attendance.

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 towards
supporting of the work of the Foundation. The grand prize winner receives a complimentary hotel
room suite at the DoubleTree Boston North Shore 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 1st, 2015 —June 30th, 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 specific period 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 complimentary nights (Thursday, Friday and Saturday) at the Doubletree Boston North
Shore for the Family Conference in Boston!
NOTE: If you hope to be considered in 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. 11-13, 2016).

Fundraising is vital to ensure that Niemann-Pick Disease related research continues to move
forward. If you have been considering hosting a fundraiser to benefit the NNPDF, this is the time to
jump in. The NNPDF offers a Fundraising Packet, a Guide to Getting Media Coverage, along with
free NPD related promotional materials to help you get started.
Go to www.nnpdf.org/familyservices_17.html for information.

Please contact the Chris Klauer, Family Services & Marketing Coordinator, at [email protected] or

920-563-0930 for more information or assistance. Chris is happy to help! 4

2016 NNPDF Family Support & Medical Conference

Doubletree Boston North Shore of Danvers, MA

The 24th Annual NNPDF Family Support & Medical Conference will be held Thursday, August 11th
through Sunday, August 14th, 2015, at the Doubletree Boston North Shore, 50 Ferncroft Road,
Danvers, Massachusetts.

Room reservations MUST be made directly with Doubletree Boston North Shore. Reservations can
be made by calling 1-800-222-8733 or visit the NNPDF web site at www.nnpdf.org for a link to make
your reservations online. Please use the code NPF when reserving your room. The NNPDF block
will be held until Wednesday, July 20th, or until the room block is sold out, whichever comes first.
Please be sure to alert the hotel of any special requests that you may have (ie: handicapped
accessible rooms, roll-away beds, mini-fridge, crib etc.) Handicap-accessible rooms will be filled on
a first-come, first-served basis. 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 into the (your) guest rooms.

Special Family Conference Hotel rate :
*The hotel room is $115.00 plus tax & fees per room, per night at the time you book.
($115.00 + 11.70% / $13.46 (tax & fees per night) for a total cost to attendees of $128.46 per night)

The cost of each room includes the following: Reserve Your
Rooms Early!
 Complimentary Wi-Fi in all guest rooms and meeting space.
Deadline is:
 Complimentary use of and access to Atlantis Sports Club with an July 20th, 2016!!
extensive weight room, cardio room, fitness classes and indoor pool.
CODE: NPF
 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.

PLEASE SEE THE TRANSPORTATION PAGE
FOR GROUND TRANSPORTATION DETAILS TO THE HOTEL!

Don’t forget the helpful online registration and Helping Hand Stipend Links!!

DoubleTree Boston North Shore

50 Ferncroft Road, Danvers, Massachusetts
Direct Line: 978-777-2500 Reservations: 800-222-8733
Visit the NNPDF web site at www.nnpdf.org for a link to make your Reservations Online.

Be sure to provide the code of NPF for the NNPDF Family Conference Rate!

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2016 NNPDF Family Support & Medical Conference

DoubleTree
Boston North

Shore

Conveniently located off the intersection of I-95 and US1 in Danvers, the DoubleTree by Hilton Hotel Boston
North Shore is a great choice. Our hotel in the prestigious Boston North Shore area is just 19 minutes from
downtown Boston and Logan International Airport, and is just a short drive from Salem, MA.

The DoubleTree Boston North Shore is well-equipped for both business travelers and families with convenient
amenities, including complimentary WiFi throughout the hotel, American cuisine at TradeWinds Restaurant &
Lounge and Starbucks® in the lobby coffee shop. Stay active or rejuvenate at our on-site Atlantis Sports Club
& Spa, featuring a full gym, indoor pool and spa, or get wet and wild with the family at one of the largest indoor
waterparks in New England - CoCo Key Boston North Shore, located on-site. (Lifeguards are on duty.)

NOTE: New for 2016
a light breakfast buffet will be offered
to all attendees (included in your registration fees.)

If you have any questions about the hotel or services available, call the NNPDF CO at 920-563-0930, or contact
DoubleTree Boston North Shore directly at 978-777-2500 (http://tinyurl.com/js2qsyl)

DoubleTree Boston North Shore Amenities and Services

 Handicap-accessible rooms, reserved on a first-  Self Parking is complimentary
come, first-served basis
 Check-in time 4:00 p.m.; check-out time 11:00 a.m.
 Atlantis Sports club with an extensive weight
room, cardio room, fitness classes & indoor pool.  Co-Co Key Water Park with 65,000 square feet of
water park fun with numerous ADA lifts!
 Complimentary Wi-Fi in all guest rooms
 On-Site restaurants: The Coffee Shop, Tradewinds
 Complimentary shuttle to and from Peabody Lounge Bar and Tradewinds Restaurant and
Shuttle Drop off and hotel. Gator’s Grab
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2016 NNPDF Family Support & Medical Conference

“Helping Hand” Financial Stipends

“Helping Hand” Financial Stipends are available to assist families in financial need
to offset the financial burden of attending the conference (NNPDF US and Canadian
families.) We encourage you to also seek support through your local community
organizations, such as, local family support agencies, service groups or churches.

Applications are due at the NNPDF Central office by Friday, July 15th, 2016 at midnight (CDT).
Stipend award amounts are determined after all applications are received and total available
funding is confirmed. The stipend amount was established to assist with the registration fee and
hotel lodging for one participant and is intended to help ensure that one individual from each NPD
family can attend the conference.

If you are applying for a “Helping Hand” stipend, please make your hotel reservations as soon as
possible. Do not wait for notification of the stipend award, as the block may fill up and our special
room rate will expire.

Stipend Application Deadline — Friday, July 15th, 2016

Please mail your completed “Helping Hand” Stipend application (the yellow form enclosed with
this packet) to NNPDF; P.O. Box 49; Fort Atkinson, WI; 53538-0049; or fax to: 920-563-0931 in
time to arrive by the deadline, Friday, July 15th by midnight (CDT). You may also complete the
“Helping Hand” form online at www.nnpdf.org.

NOTE: New for 2016
a light breakfast buffet will be offered
to all attendees (included in your registration fees.)

Boston Weather ~ What to Wear

August temperatures in the Boston area average 79F/26C for daily highs,
and 63F/17C for nightly lows.

Pack light clothing to layer, in case a rain shower pops up or a temperature
change occurs. Your East Coast friends want to remind you to be certain to
pack a sweater, cardigan or blazer, as air-conditioned meeting rooms can
sometimes feel cool.

Attire for the Family Conference is business casual to casual. Wear what makes you comfortable,
whether that is a skirt, khakis, blue jeans, or capris.

Saturday evening’s dinner/dance gala is an opportunity to gather in celebration and many in
attendance enjoy dressing up to add a special touch to the evenings festivities.

Attendees of the conference will enjoy a relaxed family-oriented, fun filled weekend, as well as
educational, informational and inspirational content.

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2016 NNPDF Family Support & Medical Conference

Hospitals and Pharmacies in Danvers, MA Area

In An Emergency DIAL “911”

Hospitals and Clinics Pharma/Dental/Optical/Fire/Police

Mass General North Shore Center Walgreens Pharmacy
for Outpatient Care 235 S Main Street
102-104 Endicott Street Middleton, MA 01949
Danvers, MA 01923 1-978-762-8522
1-978-882-6100 Open until 10:00 pm

Beverly Hospital at Danvers Advanced Dental Care
480 Maple Street 301 Newbury St., Danvers, MA 01923
Danvers, MA 01923 1-978-762-7411
1-978-304-8689

North Shore Urgent Care Northeast Eye Care
104 Endicott Street LL05 80 Lindall Street
Danvers, MA 01923 Danvers, MA 01923
1-978-739-7700 1-978-777-2292
Open until 7:00 pm

Boston Children’s Hospital Danvers Fire Department
300 Longwood Avenue 64 High Street
Boston, MA 02115 Danvers, MA 01923
1-617-355-6000 1-978-774-2425

Danvers Police Department
120 Ash Street
Danvers, MA 01923
1-978-774-1212 (Non-Emergency)

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 at http://bit.ly/1nRWMhM.

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2016 NNPDF Family Support & Medical Conference

Getting to Boston, MA

The Internet makes comparison shopping for airfares simple. Some sites you might check out:
www.travelocity.com www.expedia.com www.orbitz.com www.kayak.com
www.priceline.com www.airfares.com www.cheapflights.com

We suggest that you pay for airline tickets with a credit card. Should an airline go out of business
or cancel a flight, you may be able to dispute the charges and receive your money back. You can
also purchase travel insurance through a travel agent or services such as AAA. Many airlines
offer trip insurance on their web sites. Cancellation policies differ between airlines. Some airlines
may honor tickets for one year from the date of issue, subject to an additional fee. (If the
replacement ticket costs more than the original, the difference must also be paid.) Some airlines
may charge a per person fee for any changes, plus any difference in the price of the new fare.
Check with your airline for its specific policy. Please remember when traveling to check with your
airline regarding specific rules when traveling with wheelchairs, scooters or oxygen.
Depending on your location, you may want to consider other modes of transportation, such as
train or bus. Visit www.amtrak.com and www.greyhound.com for more information.

Logan Airport (BOS)

Boston Logan International Airport (BOS) is New England’s largest transportation center. It has
four passenger terminals, A, B, C and E, each with its own ticketing, baggage claim and ground
transportation facilities. The terminals are connected to the central parking garage by a walkway
system. In all, there are 94 gates with contact jet bridges and nine regional jet gates at the airport
& more than 40 airlines fly nonstop to more than 100 domestic and international destinations.

Ground Transportation to the
DoubleTree Boston North Shore

Once you arrive and pick up your luggage you should take the Logan
Express Shuttle to Peabody. The Logan Express Shuttle picks up at all
terminals. When you are on the Logan Express please call the Doubletree Boston North Shore at
1-978-777-2500 and arrange for the complimentary hotel shuttle to pick you up at the Peabody
drop off. The Logan Express shuttle will cost you $12.00 one way or $22.00 round trip/adult ~
children 17 and under ride free when with their family. The Hotel Shuttle is free from the Peabody
drop off to the hotel. Please be sure to check out The RIDE information if traveling with mobility
devices on the next page. You can find out more information about the Logan Express Shuttle at
www.massport.com/logan-airport/to-and-from-logan/logan-express/peabody/.

Car Rental Agencies at Logan (BOS) Airport:

Advantage: 1-617-567-4140 www.advantage.com Enterprise: 1-800-736-8222 www.enterprise.com

Alamo: 1-800-462-5266 www.alamo.com Hertz: 1-800-654-4173 www.hertz.com

Avis: 1-617-568-6600 www.avis.com National: 1-800-227-7368 www.nationalcar.com

Budget: 1-617-497-3733 www.budget.com Payless: 1-617-561-0139 www.paylesscar.com

Dollar: 1-866-434-2226 www.dollar.com Thrifty: 1-877-283-0898 www.thrifty.com

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2016 NNPDF Family Support & Medical Conference

Special Transportation Options

The RIDE is to help assist those that have mobility devices and
need to utilize a different mode of transportation other than bus, subway or trolley.

For those individuals that will be traveling with mobility devices you may apply for The RIDE. In Massachusetts they
utilize a system called The RIDE. The RIDE vehicles can safely accommodate mobility devices which, when occupied,
weigh up to 800 pounds and have a footprint not exceeding 54 inches in length and 34 inches in width.

WHAT: The RIDE paratransit service provides door-to-door, shared-ride transportation to eligible people
WHEN: who cannot use fixed route transit (bus, subway, trolley) all or some of the time because of a
COST: physical, cognitive or mental disability.

The RIDE operates 365 days a year generally from 5AM to 1AM in sixty cities and towns
including Boston and the area vicinities.

The local one way ADA fare for each registered passenger or guest is $3.00 when booking 1-14 days
in advance. One way fares for premium non-AA trips are $5 per registered passenger or guest.

WHO: A Personal Care Assistant (PCA) accompanying a registered user is not charged a fare. One other
HOW: person may travel as a guest. Additional guests are allowed if there is space available.

You must sign up for The RIDE as soon as possible. It takes a bit to get all information to the
appropriate authorities and be approved. Once you are signed up you will receive a RIDE ID number.

MORE Please go to: http://www.mbta.com/riding_the_t/accessible_services/?id=7108.
INFO: If you would like to use other transportation in Massachusetts you can go to:
http://www.mbta.com/riding_the_t/accessible_services/.

HOW TO The NNPDF Central Office has been in contact with the RIDE authorities. Here is the information they
APPLY? provided to assist you in signing up for The RIDE.

Visitor eligibility for THE RIDE can be established by sending a copy of ADA Paratransit Certificate of

Eligibility from another transit agency, along with contact information while in the area. Any visitor who does not have

certification of ADA paratransit eligibility from their home agency, or if they are in an area, without paratransit services

or ADA, (i.e. international visitors), the visitor can supply additional information such as; their home place of residence,

address where they will be staying along with contact information while in the area, mobility device used, letter from

their licensed health care provider, etc. (conference hotel information listed below*)

This information can be emailed to [email protected] or directly to our contact at [email protected].
It can also be faxed to 617-337-2737, or mailed to THE RIDE Eligibility Center at 570 Rutherford, Boston MA, 02129.

*Hotel Address: DoubleTree Boston North Shore 550 Ferncroft Road, Danvers, MA 01923 1-978-777-2500

To set up a  Documentation of ADA paratransit eligibility with another transit authority
RIDE account, OR if not available
you will need:
 Alternative information on disability

 First and last name, home address, date of birth, phone number

 Address while visiting the area and phone number*

 Disability Type along with mobility device used

 Emergency contact name and phone number 1100

2016 NNPDF Family Support & Medical Conference

The NNPDF presents “Salem or Swim”

NNPDF Family Conference Attendees are being given the opportunity to
participate in a variety of activities on Friday night, August 12th, 2016.

SALEM 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 online at http://bit.ly/1nRWMhM.

SWIM 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.

EXPLORE Go out and explore on your own! The next page

shows a great many places for you to go out and all that Boston has
to offer. Materials from the Boston Area Chamber of Commerce and
Visitor’s Bureau will be available at the conference registration area
on Thursday.

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2016 NNPDF Family Support & Medical Conference

EXPLORE

What to See and Do in the Greater Boston Area

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
known for helping to shape our nation’s history and you can discover it all while you are visiting.

Rebecca Nurse Homestead in Danvers Endicott Park in Danvers Derby Wharf Lighthouse in Salem

New England Aquarium in Boston Faneuil Hall Marketplace in Boston Peabody Essex Museum in Salem

Water Cruises in Boston & Salem Museum of Science in Boston John F. Kennedy Library & Museum

Boston Children’s Museum in Boston Salem Witch Museum in Salem

The Freedom Trail in Boston House of the Seven Gables in Salem

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.

Check out this handy guide
Official Visitor Guide from the Greater Boston Convention & Visitors

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