mda massachusetts august newsletter
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MDA Massachusetts August NewsletterTRANSCRIPT
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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
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 [email protected]
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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 [email protected]
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