Chapter Highlights

Image
August ENews Events Collage 2022

Our Fall Events are just around the corner!

Are YOU registered yet?

We can't wait to see you all this fall at our Ride and Walks to Defeat ALS. These events are a great opportunity for our Massachusetts ALS community to come together for a day of fun - won't you join us?

Western MA Walk to Defeat ALS - Sept. 11, 2022

Ride to Defeat ALS - Sept. 18, 2022

Worcester Walk to Defeat ALS - Sept. 18. 2022

Boston Walk to Defeat ALS - Oct. 16, 2022

North Shore Walk to Defeat ALS - Oct. 23, 2022

Image
Team Week All MA Events 2022

Mark Your Calendars: Team Week for ALL Events is

Monday, August 22nd - Friday, August 26th!

This year we're having one big team week for all our events: Worcester, Western MA, North Shore, and Boston Walks as well as our Ride to Defeat ALS! Those who participate on each day's challenge, listed below, will be entered into a drawing to win items such as $50 Amazon gift cards, $50 gas cards, and more! 

Monday: Make a self donation
Tuesday: Donors of at least $25
Wednesday: Recruit a new friend
Thursday: Share your fundraising page on Facebook
Friday: Share your "Why I Walk/Ride" story with your event manager or on social media

For the latest updates, make sure you're following us on social media!

Facebook Instagram Twitter 

YouTube LINKEDIN

───────────────────────────────────────────
Image
Western MA Walk ENews Aug 2022

Western MA Walk to Defeat ALS

Sunday, September 11, 2022 | Look Park, Florence, MA

The Western MA Walk to Defeat ALS has raised over $23,700,
which is 23.8% of our $100,000 goal!

Register for the Western MA Walk to Defeat ALS

Image
Western MA ENews Sponsors Aug 2022
Thank you to our amazing Western MA sponsors for their ongoing support!

Is your company interested in becoming a sponsor for this year's Western MA Walk to Defeat ALS? For more information, contact Tara Gottlieb by clicking the button below:

Contact Tara

───────────────────────────────────────────
Image
Worcester Walk ENews August 2022

Worcester Walk to Defeat ALS

Sunday, September 18, 2022 | Polar Park, Worcester, MA

The Worcester Walk to Defeat ALS has raised $22,900,
which is 22.9% of our $100,000 goal!

Register for the Worcester Walk to Defeat ALS

Image
Worcester Walk Sponsors Aug 2022 - V2
Thank you to our amazing Worcester sponsors for their ongoing support!

Is your company interested in becoming a sponsor for this year's Worcester Walk to Defeat ALS? For more information, contact Laura Donahue by clicking the button below:

Contact Laura

───────────────────────────────────────────
Image
Ride ENews Aug 2022

Ride to Defeat ALS

Sunday, September 18, 2022 | The Longfellow Health Club, Wayland, MA

The Ride to Defeat ALS has raised $112,400,
which is 40.8% of our $275,000 goal!

Register for the Ride to Defeat ALS

Image
Ride Sponsors ENews Aug 2022
Thank you to our amazing Ride to Defeat ALS sponsors for their ongoing support!

Is your company interested in becoming a sponsor for this year's Ride to Defeat ALS? For more information, contact Ashley Carrier by clicking the button below:

Contact Ashley

───────────────────────────────────────────
Image
Boston Walk Aug ENews 2022

Boston Walk to Defeat ALS

Sunday, October 16, 2022 | **NEW LOCATION** UMASS Boston, Boston, MA

The Boston Walk to Defeat ALS has raised $65,500,
which is 21.8% of our $300,000 goal!

Register for the Boston Walk to Defeat ALS

Image
Boston Walk Sponsors Aug 2022
Thank you to our amazing Boston sponsors for their ongoing support!

Is your company interested in becoming a sponsor for this year's Boston Walk to Defeat ALS? For more information, contact Tara Gottlieb by clicking the button below:

Contact Tara

───────────────────────────────────────────
Image
North Shore ENews Aug 2022

North Shore Walk to Defeat ALS

Sunday, October 23, 2022 | Endicott College, Beverly, MA

The North Shore Walk to Defeat ALS has raised $7,000,
which is 4.7% of our $150,000 goal!

Register for the North Shore Walk to Defeat ALS

Image
North Shore ENews Aug 2022 - V2
Thank you to our amazing North Shore sponsors for their ongoing support!

Is your company interested in becoming a sponsor for this year's North Shore Walk to Defeat ALS? For more information, contact Ashley Carrier by clicking the button below:

Contact Ashley

───────────────────────────────────────────

Live in New Hampshire, Maine, or Vermont and want to join us for a Walk to Defeat ALS? Check the list below to find an event near you:

Bangor Walk to Defeat ALS (ME) - AUG. 27, 2022

Portland Walk to Defeat ALS (ME) - SEPT. 10, 2022

Vermont Walk to Defeat ALS - SEPT. 24, 2022

New Hampshire Walk to Defeat ALS - OCT. 8, 2022

Questions? Contact Karrie Boskee (New Hampshire, Vermont)

Contact Karrie
or

Nick Marold (Maine) for more information!

Contact Nick 

 ─────────────────────────────────────────── 
Image
Camp HLC MA 2022 Zoom In (2)

Camp HLC Massachusetts is Back Again! 

August 12-14, 2022 | Camp Emerson, Hinsdale, MA

Camp HLC is typically a three-day, overnight retreat for children and young adults, ages 6-21, who have or have had a loved one battling ALS. Families are invited as well. It is an opportunity to have fun, be challenged through team building exercises, and meet peers who are going through a similar experience.  
 
Camp HLC is provided free for our ALS families by Hope Loves Company and our sponsors. All meals and activities are included. 
 
Camp HLC offers so many fun experiences, including hikes, games, zip lines, rock climbing, boating, fishing, a ropes course, archery, yoga, arts and crafts, and much more. 

Register for Camp HLC Massachusetts 2022

─────────────────────────────────────────── 
Image
Save the Date Fall Symposium Sept 2022

Save the Date: Fall Symposium
September 21, 2022 | Morse Institute Library, Natick, MA | 12-5 PM

Join us this September at the Morse Institute Library in Natick for a day of ALS education and community. We'll be joined by a slate of speakers and all are invited to attend.

Register now to reserve your seat!

Register here for Fall Symposium

For any questions, please contact John Adebayo at [email protected].

Email John Adebayo

Man Living with ALS in Power Wheelchair Smiling

ALS Focus Mobility Survey Launched - We Need Your Help!

ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and challenges. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.

All data collected is de-identified and shared free of charge with the entire ALS community.

Participate in research outside of clinical trials. You are eligible at any stage of disease. You live with the challenges of ALS every day. Share your opinions and insights on your disease journey to inform change.

Click Here to Learn More & Register to Take the ALS Focus Surveys

───────────────────────────────────────────
Image
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].

Print Friendly and PDF