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March 2014 August 2014

Jay Gardiner Executive Director

Vanessa Malfitano

Boston North Area Director

Kate Tighe

Boston Area Director

David Spellman Director of Health Care Services

Molly McDermott

Health Care Services Coordinator

Erin Snow

Health Care Services Coordinator

Brittany DeFrancesco

Fundraising Coordinator

Brad Gosselin

Fundraising Coordinator

Will Southall

Fundraising Coordinator

Amy LHeureux

Administrative Assistant

Katie Macomber

Administrative Assistant

Lindsay Johnson

Natl Endurance Manager

Massachusetts Chapter Staff

Im very excited to be beginning my journey with MDA as one of the Health Care Service Coordinators. I just relocated from Providence, RI, where I worked at a non-profit as a social worker for a specialized foster care and adop-tion agency. I also have experience as a camp counselor for special needs children at the YMCA, and as a camp counselor for several Connecticut summer camps, and Ive been fortunate to be involved with Special Olympics of Connecticut. I look forward to being able to meet everyone and get to know you, and your families, so I can help you with any of your needs.

Meet Our New Staff Members!

Our New Executive Director Jay Gardiner

MUSCLES MATTER MDA Massachusetts Chapter Newsletter

Our New Health Care Coordinator Erin Snow

33 Lyman St. Suite 205

Westborough, MA 01581

Phone - (508) 898-3375 - Fax (508) 366-2272

boston@mdausa.org

I am pleased to be joining the Massachusetts MDA team as Executive Director. My profes-sional background as Commissioner of HHS, Worcester, MA provides a diverse and com-prehensive understanding of the vital services MDA delivers and the community need. Dur-ing my brief introduction, I have observed that the well-respected reputation and increasing stature MDA enjoys is certainly deserved. This is an exciting time to be a part of the MDA organization, given the extraordinary medical research advancements being achieved. The passionate and dedicated staff, sponsors, volunteers, advocates, and community part-ners makes the MDA mission possible. I look forward to participating in the progress and promise of MDAs success. To all of you who support MDA, we thank you, to those who will - thank you.

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Watch for upcoming Fill the Boot drives.

Check us out on Twitter and Facebook for more information!!!

Upcoming Fill the Boot Events

THANK YOU Cambridge Fires Golf Tournament

Raised $10,500!!!

Boston L718 - 8/22, 9/5 Stoneham L2116 - 8/25, 8/28 Hudson - 8/15 Quincy L792 - 8/15 Ashland L1893 - 8/16 Ipswich - 8/16, 8/23 Blackstone L4139 - 8/23 Billerica L1495 - 8/17, 8/24, 8/28, 8/30 Cambridge L30 - 8/20 Chelsea L950- 8/21, 8/22, 8/23 Gloucester - 8/21, 8/22, 8/23 Salisbury L4694 - 8/22, 8/23 Ashby - 8/23 Holliston - 8/23 Southbridge L2194 - 8/28 Fitchburg L3128- 8/28 - 8/29 Ayer L2544 - 8/28, 8/30 Dracut L2586 - 8/28, 9/6 Haverhill L1011 - 8/29, 8/30 Wilmington L1370 - 8/29 Watertown L1347 - 8/29 Beverly L1669 - 8/30

Middleton L3097 - 8/30 Newbury - 8/30 Northbridge L3338 - 8/30 Douglas - 8/30 Methuen L1691 - 8/30, 8/31 Brookline L950 - 8/30 - 8/31 Winthrop L1070- 8/30 West Springfield - 8/31 - 9/1 North Reading L1857 - 8/31 Haverhill L1011 Softball Tournament - 9/6/14 Wenham - 9/7 Marlborough Fire Golf - 9/15 Milford L2140 - 9/20 Winchester L1564- 9/26 Andover L1658- 9/27 - 9/28

Waltham Fire - $7,555

Salem Fire - $3,530

Gardner Fire - $2,888

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Sponsored by

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

Improving Drug Development: The MDA Community Weighs In

MDA has responded to questions from the US House of Representatives about how to improve and

speed up the drug development process ...

MMD1: Antisense Drug Moves to Human Testing Isis Pharmaceuticals is launching a phase 1 trial of ISIS-DMPKRx, an experimental drug for type 1

myotonic muscular dystrophy ...

Group Doctor Visits May Improve Life for People with Muscle Disorders

MINNEAPOLIS A new study suggests that people with muscle diseases such as muscular dystro-

phies may benefit more from group doctor visits than individual appointments. The study is pub-

lished in the June 18, 2014, online issue of Neurology, the medical journal of the American Academy

of Neurology

Prosensa Will Pursue Accelerated Approval for Drisapersen to Treat DMD

The company plans to submit a New Drug Application to the U.S. Food and Drug Administration later

this year, and has committed to conducting two confirmatory post-approval clinical trials...

DMD: Drisapersen Dosing Planned for Later in 2014 In a May 22, 2014, letter, Prosensa provides updates on drisapersen and other Duchenne MD

compounds in its pipeline, and on its natural history study...

DMD: HT-100 Trial Has Reopened A trial of an experimental compound to counteract muscle inflammation and scarring in Duchenne

MD resumes, after an interruption to complete a dog safety study... (Please click on title for each article to view entire article)

To read more exciting news, please click here: www.mda.org/research

DMD: Eteplirsen Data Still Encouraging at 144 Weeks

Sarepta Therapeutics continues to report encouraging data from its extension study of

eteplirsen, designed to treat Duchenne MD due to specific genetic mutations

For more, please go to http://quest.mda.org/news/dmd-eteplirsen-data-still-encouraging-144-weeks

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MDA Team Momentum participants are dedicating

their participation in a half or full marathon to the fight

against muscle disease! MDA is the official

charity of the Michelob Ultra Boston 13.1 Half

Marathon on September 14th and we would love for

you to get involved! Our runners will have been

training and fundraising for the MDA for 12+ weeks

and we want to support them as they complete this

amazing accomplishment!

We are looking for volunteers/supporters on race day

for Cheer Stations along the race course as well as

to assist and thank our runners at the Post-Race

Victory Tent!

Date: Sunday

September 14, 2014

Time: 7am-11am

CONTACT: If you are interested in coming out to the race or other opportunities with

Team Momentum, please contact Lindsay Johnson at 508-621-7895 or LJohnson@mdausa.org

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Do you need a ramp or stair lift? Are you looking to donate one?

Amramp has been helping MDA families with wheelchair ramps and other accessibility solutions for many years, and we are excited to announce a new joint initiative to assist families with accessibility needs. Together we are starting a re-use program for both ramps and stairlifts and we need your help.

What is a re-use program?

The idea is to recycle wheelchair ramps and stairlifts within the Massachusetts MDA community. As families move, or accessibility needs change, the ramps and stairlifts may no longer be needed or useful to the family. Donating this ma-terial to MDA will allow these much needed items to be uti-lized by another local MDA family. Over time this should bring down the costs for wheelchair ramps and stairlifts for MDA families and also take full advantage of the support the local MDA chapter can provide.

How can you help?

You can help us with this. If you have an Amramp modular ramp system or a stairlift and are interested in possibly donating these items now or in the future please call or email the office and let us know what equipment you have. This is a way to help MDA families today, to-morrow, and in the future with the costs of making their homes accessible.

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Facebook.com/MDA.Massachusetts twitter.com/MDA_Mass

MDA/ALS Support Group Where: 33 Lyman Street, Suite 205, Westborough, MA 01581

When: TBD

For more information please contact Dave Spellman at (508) 898-3375 or dspellman@mdausa.org

August 26 - Boston Show of Strength Preview Party 5-9pm @ Florian Hall, Dorchester, MA

August 27 - Springfield Show of Strength Preview Party 5:30-9pm @ Sheraton Springfield, Springfield, MA

August 31 - Show of Strength National Broadcast 9pm @ your local ABC network

September 8 - Dracut Fire L2586 8th Annual Charity Golf Tournament @ Four Oaks Golf Course, Dracut, MA

September 10 - Worcester Lock-Up @ 111 Chop House, Worcester, MA www.mdalockup.org/WorcesterLU

September 14 - Team Momentum Half Marathon @ Boston, MA www.mdateammomentum.org/bostonhalf

September 15 - Marlboro Fire Golf Tournament @ Marlborough, MA

September 25 - 1st Annual Cocktails & All That Jazz @ Blue Hills Country Club, Canton, MA www2.mda.org/jazzboston

October 19 - Halloween Witch Ride @ Boston Harley-Davidson, Everett, MA www.MDAWitchRide.com

November 1 - Muscle Summit @ Doubletree Hotel by Hilton, Westborough, MA

www2.mda.org/site/Calendar?id=103641&view=Detail