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INSIDE THIS ISSUE

Page 1 - Genzyme
Page 2 - Muscle Walk
Page 3 - MDA Holiday Party
Page 4 - Team Momentum
Page 5 - Fill the Boot
Page 6 - Lock Up & Hops
Page 7 - Research Updates
Page 8 - Summer Camp
Page 9 - Muscle Team
Page 11 - Muscle Summit
Page 10 - Upcoming Events

Our office is looking for people to help out

at events and with mailings, and volunteer
camp counselors for Summer Camp.
If you are interested in volunteering please
contact the office at 508-898-3375 or by
email at boston@mdausa.org.

33 Lyman St. Suite 205, Westborough, MA 01581 - Phone - (508) 898-3375 - Fax (508) 366-2272

Jay Gardiner

Molly McDermott

Will Southall

Executive Director

Health Care Services Coordinator

Fundraising Coordinator

Erin Snow

Amy LHeureux

Health Care Services Coordinator

Administrative Assistant

Brittany DeFrancesco

Katie Macomber

Fundraising Coordinator

Administrative Assistant

Brad Gosselin

Lindsay Johnson

Fundraising Coordinator

Natl Endurance Manager

Vanessa Malfitano
Boston North Area Director

Kate Tighe
Boston Area Director

David Spellman
Director of Health Care
Services

Thank you and Congratulations Team

simplifying IT

Wa n t t o J o i n Te a m
Momentum?
Sign Up Today at

www.MDATeam.org
Participants receive a complete
half or full marathon training
program, Coach support,
endurance clinics, gear, fundraising
support, and a VIP race weekend
experience!

Currently accepting registrations

for the Dallas Marathon and Half
Marathon on December 14th

Looking for a Boston area or other

T h a n k y o u t o a l l o f o u r M D A Te a m
M o m e n t u m B o s t o n 1 3 . 1 P a r ti c i p a n t s ,
S u p p o r t e r s , a n d Vo l u nt e e r s ! ! !
On September 14th, 2014, MDA hosted the very first MDA Team
Momentum event weekend! After months of training, more than
65 MDA Team Momentum participants participated in the
Michelob Ultra Boston 13.1 Half Marathon! Team Momentum
participants dedicate their training and race to the fight against
muscle disease by fundraising to support MDA, and our Boston
13.1 participants collectively raised over $92,000!!!
A huge thank you to all of our participants, families, and volunteers
who made the Boston 13.1 such an amazing success!!! Every
dollar raised brings MDA one step closer to the ultimate finish line
of creating a world free from the harmful effects of muscle
disease!

Questions? Contact Lindsay at

Ljohnson@mdausa.org or 508-621-7895

WWW.MDATEAM.ORG

Burlington Lock-UpWednesday December 10th

Outback Steakhouse
34 Cambridge Street
Burlington, MA 01803

If you are a family and want to stop by the Burlington Lock-Up and
say thank you to our jailbirds please call the office at
508-898-3375 and let us know.

The school year is just beginning and is the perfect time to start planning a Hop-A-Thon.
To date we have had over 120 daycare, preschool and elementary schools participating
in our 2015 program. In our 2014 program, we have raised over $48,000 for our families
and still have many more centers hopping. It is not too late to get your school involved in
a Hop for this year or next year!
What is a Hop-a-Thon? It is a free, weeklong motivational disability awareness program
for young children created by the Muscular Dystrophy Association. Short daily lesson
plans enhance childrens understanding of physical disabilities and teach 3 key principles: disability awareness, acceptance of differences and assisting others.
If your childs school is not yet hopping and you want to get them involved, please
call the MDA office at 508-898-3375 or email bdefrancesco@mdausa.org. We look
forward to hearing from you.

Stay connected to MDAs worldwide research team, and get the latest research news online at www.mda.org/research!

PTC To Test RG7800 in SMA

The investigational compound is designed to raise levels of the SMN protein, a lack of which is the
underlying cause of spinal muscular atrophy (SMA)

BMD: Follistatin Gene Transfer Results Encouraging

Four of six men with Becker muscular dystrophy increased their six-minute walking distance after
injections of follistatin genes into the thigh muscles of both legs

Drug Development for DMD: Fall 2014 Update

Compounds designed to alter genetic instructions for dystrophin, increase production of utrophin, or
prevent scar tissue formation in muscle are moving through the development pipeline
MDA Massachusetts has three loan closets across the state. We may have durable medical
equipment that would hlp you or a family member!

Please call our office to find out if we can help you

You can also donate items to the MDA loan closet for others
(Items should be in good working order)

Items we are in great need of:

What families and campers can expect from MDA summer camp:
MDA summer camp gives kids with muscle disease a chance to discover new interests, gain
increased self-confidence and experience the independence of being away from home in an
environment where barriers dont exist.
The skills campers acquire at camp are more important than ever, as more of the kids and teens
MDA serves are continuing the journey into young adulthood.
Its a week full of fun, laughter and new adventures, but its also a unique opportunity to bond
with other kids who understand the challenges that come from living with a muscle disease.
MDA camp offers a fun and safe outdoor experience, along with opportunities to participate in a variety of
activities such as horseback riding, swimming, adaptive sports, arts and crafts, camp dances and much more.
Aided by one-on-one volunteer counselors who are by their sides day and night, campers get to do all the fun
activities that regular life doesnt always allow them to do. Counselors push wheelchairs, lift and transfer
youngsters and even bunk with their campers.

Volunteer Camp Counselors Wanted (18+)

Whether its helping your camper reel in his first catch of the week, or working together to
score a goal in power soccer, you are there as a friend, mentor and assistant for the week.
Some of our volunteers apply their week at camp towards collegiate volunteer
or major requirements. The program gives you hands on experience perfect
for those in the pre-med, OT, PT, nursing, education and those interested working with
youth. The MDA camp program also offers leadership opportunities for those
interested in volunteering for multiple years.
For more information about the MDA Camp Program, contact:
Muscular Dystrophy Association
(508) 898-3375 dspellman@mdausa.org

Thank You Speakers:

Basil T. Darras, MD
Louis M. Kunkel, PhD
Sabrina Paganoni, MD
Katie Weagle, MS, CCLS
Jason J. Port
Thurman Wheeler, MD
Gina Adolphson
Kevin J. Felice, DO
Anna Wood
Mark J. Rosen
Andrea Charron Hachey

Below are some of our upcoming events for the MDA of Massachusetts. If are
interested in attending or volunteering at one of these events please contact the
office at 508-898-3375.
Thank you and we look forward to seeing you soon.

Family Holiday PartySunday December 7th

Burlington Lock-UpWednesday December 10th
Muscle TeamThursday February 5th
Waltham Lock-UpWednesday February 25th
Marblehead Fire Cooking for a CureSaturday March 21st
MDA Greater Boston Muscle WalkSpring 2015

MDA's Matching Grant Campaign

MDAs new Matching Grant campaign will double fundraising impact when donors
make a donation from now through the end of the year at mda.org/double.