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About Our Chapter
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Chapter Highlights

Registration Open 2021 The ALS Association Massachusetts Chapter Events

Announcing our 2021 Massachusetts Events Schedule!

After a difficult year, we are thrilled to welcome back our Massachusetts ALS community with a robust 2021 events schedule! See the full list below and click the buttons to register for one or more of these exciting 

CEO SOAK: Massachusetts Leaders & Educators Edition - Thursday, June 10, 2021
Rings Fountain on the Rose Kennedy Greenway, Boston, MA

REGISTER FOR THE CEO SOAK

 

Ride to Defeat ALS - Sunday, September 19, 2021
Longfellow Health Club, Wayland, MA

REGISTER FOR THE RIDE TO DEFEAT ALS

 

Worcester Walk to Defeat ALS - Sunday, September 26, 2021
Polar Park, Worcester, MA

REGISTER FOR THE WORCESTER WALK TO DEFEAT ALS

 

Boston Walk to Defeat ALS - Sunday, October 3, 2021
Carson Beach, Boston, MA

REGISTER FOR THE BOSTON WALK TO DEFEAT ALS

 

Western Mass Walk to Defeat ALS -  Sunday, October 10, 2021
Look Memorial Park, Florence, MA

REGISTER FOR THE WESTERN MASS WALK TO DEFEAT ALS

 

North Shore Walk to Defeat ALS - Sunday, October 17, 2021
Endicott College, Beverly, MA

REGISTER FOR THE NORTH SHORE WALK TO DEFEAT ALS

Make sure you're following us and keep an eye on our social media for updates on all our events and MORE throughout the year! 

Facebook Instagram Twitter 

YouTube LINKEDIN

Is your company interested in getting involved with our chapter or events?

CONTACT LAURA DONAHUE

CEO Soak Massachusetts YouTube Announcement Video 2021 Still
See our official Massachusetts CEO Soak Announcement here!
Watch the video to learn more!

We are so excited to share with you our 1st Annual Massachusetts CEO Soak!

Our Massachusetts CEO Soak 2021 registration is now OPEN – have YOU signed up yet?

We are challenging business and higher education leaders across the Commonwealth to join us on Thursday, June 10, 2021 at the Rings Fountain in the North End of Boston to get soaked and raise awareness and funds for The ALS Association Massachusetts Chapter; there’s even a virtual attendance option!

The CEO Soak presents a unique opportunity for members of the local business community to network all while working towards a common goal: ending ALS.

We hope that you’ll accept the challenge AND encourage your colleagues and fellow leaders to join us for our inaugural soak that supports the hundreds of Massachusetts ALS families affected by this disease. We’re getting soaked – are you?

FOR MORE INFORMATION AND TO REGISTER, CLICK HERE

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Hot Topics in ALS: Feeding Tubes and COVID-19 Vaccines (Massachusetts Perspectives) with Dr. James Berry, MD, MPH and Sarah Luppino, MSN, NP-BC from the MGH ALS Clinic

Join us for a special Community Group Presentation!

The ALS Association Massachusetts Chapter is thrilled to have Dr. James Berry, MD, MPH and Sarah Luppino, MSN, NP-BC from the MGH ALS Clinic join us to discuss two hot topics in ALS clinical care that are frequently discussed in our Community Groups – COVID-19 vaccines and feeding tubes. Their talk will feature a 30-45 minute presentation followed by a 45-60 minute Q&A period.  

After registering, you will receive a confirmation email containing information about joining the meeting. Email your vaccine and feeding tube questions by end of day, Friday April 9th to [email protected]. 

Click Here to Register in Advance for This Meeting

April Community Groups

Register today for our completely virtual Community Groups from the comfort and safety of your own home! This month we have four groups meeting throughout the month at various times so you can choose what best fits your needs and schedule. Whether it's our Caregiver Cocktail Hour, Evening Community Group, or one of the informative presentations put on by our special guests, we hope you'll join us! Contact [email protected] with any questions. 

Evening Community Group with Guest Speaker Eric Lajeunesse from MobilityWorks

Wednesday, April 7, 2021 6:00-7:30 PM Eastern Time (US and Canada)

Community Group Presentation with James Berry, MD, MPH & Sarah Luppino, MSN, NP-BC

Tuesday, April 13, 2021 2:00-3:30 PM Eastern Time (US and Canada)

Community Group Presentation with Cara Haggerty of Hope Loves Company

Thursday, April 15, 2021 3:00-4:30 PM Eastern Time (US and Canada)

Caregiver Cocktail Hour Community Group

Tuesday, April 27, 2021 7:00-8:00 PM Eastern Time (US and Canada)
John Hedstrom Executive Director of The ALS Association Massachusetts Chapter

From the Desk of the Executive Director

Executive Director John Hedstrom of The ALS Association Massachusetts Chapter offers a comprehensive update about the goings on with local events, care services, and the promise that April brings for the entire Commonwealth.
Read John's April Update Here
NORD MedicAlert® Assistance Program Flyer Image 2021

NORD's MedicAlert® Assistance Program

NORD’s MedicAlert Assistance Program provides MedicAlert products and services to eligible individuals in the rare disease community. If someone with a rare disease can’t speak for themselves in an emergency, MedicAlert can be their voice in providing important and potentially life-saving information. The program provides eligible individuals with a MedicAlert product and 3-years of membership.

Learn More Here

Jane Calmes ALS Scholarship Fund 2021 Application

The Jane Calmes ALS Scholarship Fund Application Process is Open!

In addition to the physical and emotional toll faced by people impacted by ALS, the financial strain of the disease can devastate a family’s ability to plan for future expenses. Families impacted by ALS often do not have the financial means to support the pursuit of college degrees or vocational certificates.

Recognizing this unmet need, The ALS Association and Mark Calmes, vice chair of the Association's National Board of Trustees, established The Jane Calmes ALS Scholarship Fund in honor of Mark's wife, Jane, who lost her battle with ALS in 2017.

Learn More and Apply Here by May 24, 2021

Man Living with ALS Being Fitted with Breathing Device

Day in My Life Project: An Inside Look at ALS

Are you or someone you love currently living with ALS? We need your help!

So often, people who have never been exposed to ALS have no knowledge about what the day to day looks like for a family affected by ALS. Here’s where you come in!

We’d love you to take videos (and photos if you wish!) of various activities you engage in daily. This could be:

  • Using DME/LME in or outside of your home
  • Living with a PEG tube
  • AAC communication with caregivers (hired or living in your household)
  • Meal time routines with adaptive utensils
  • Trach and vent use (maybe someone who is on 24/7)
  • Power Wheelchair use inside and outside the home – to include a ramp?
  • Transfers from bed (with hoyer lift) to power wheel chair
  • Anything else you think you want to share!
  • You can also choose to include a video of telling your (or your loved one’s) diagnosis story and/or how The ALS Association Massachusetts Chapter helps your family on your ALS journey.

We hope through this program we can help educate those who do not have intimate knowledge of what living with ALS is like. This series will also help families just starting their ALS journey feel like they’re not alone and that there are others who understand what they’re going through every day.

Contact Our Communications & Marketing Manager to Participate

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Augmentative Communication Tablet Devices with Various Accessories

Communication Device Donations Needed in Massachusetts!

We need your help! We rely on donations of dedicated speech generating devices (SGDs), with and without eye tracking cameras for our Augmentative and Alternative Communication (AAC) and Assistive Technology (AT) Loan Program. We also rely on donations of SGD mounts (wheelchair and rolling floor mounts). Our current eyegaze device inventory in our AAC/AT loan program is critically low. If you obtained a SGD through insurance and it is no longer being used, please consider donating it to our chapter, so we can help another person with ALS in need.

The Impact of COVID-19 on AAC Services: Access to AAC evaluations with qualified speech-language pathologists has been challenging during the COVID pandemic and Medicare does not cover these evaluations when they are delivered via telehealth. Therefore, it can be difficult for people with ALS to obtain necessary SGDs through their insurance. For people with ALS living in long term care facilities with severely restricted visitation due to COVID-19, a loaned SGD may serve as their only safe connection with their family and friends. Your tax-deductible donation can make a significant impact for a person with ALS!

We are seeking SGDs that are preferably less than 4 years old (Please email Jen at [email protected] with questions about donating older devices).

  • Tobii Dynavox I-12 or I-15, preferably 2017 or newer, or I-13/I-16
  • PRC Accent with NuEye or Look eyegaze
  • Eye Gaze Inc. (Formerly LC Technologies) EyeGaze Edge
  • Forbes AAC (Formerly FRS) Winslate with Enable Eyes eyegaze camera
  • Talk To Me Technologies Zuvo with eyespeak camera
  • NeuroNode Trilogy

We are also in need of wheelchair or rolling floor mounts for SGDs. If you would like to donate a wheelchair mount, please let us know the wheelchair year, make and model.

  • ConnectIT mounts
  • Rehadapt mounts – Classic or Pentalock
  • Daessy mounts
Interested in donating?

Please contact Jennifer Chapin, Speech Pathologist and AAC Specialist,

at (781) 234-5307 or via email [email protected].

About Our Chapter
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