From the Desk of the Executive Director
In his opening statement of the year, Executive Director John Hedstrom outlines a robust plan to jump start 2021 for the Massachusetts ALS community.
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 our Informational ALS group sessions, we hope you'll join us! Contact [email protected] with any questions.
Missed our Your Roadmap to ALS: Virtual Symposium 2020?
Don't worry; it's now available to view on our YouTube page!
The ALS Association Massachusetts Chapter Events
Each year, The ALS Association Massachusetts Chapter holds several fundraising events to raise awareness and funds that help provide invaluable services to people living with ALS. Participation in these events by people like you helps raise critical funds for our mission. As 2021 unfolds, we will continue to adapt to the needs of our community in conjunction with the state's dynamic landscape with respect to the COVID-19 pandemic.
Since our two spring events, Worcester and Western MA, were held this past October due to the COVID-19 pandemic, we felt the appropriate course of action would be to keep those events in the fall for 2021. Check out our this year's event calendar below:
CEO SOAK: Massachusetts Leaders & Educators Edition - Thursday, June 10, 2021
Worcester Walk to Defeat ALS - Fall 2021
Western MA Walk to Defeat ALS - Fall 2021
Ride to Defeat ALS - Sunday, September 19, 2021
North Shore Walk to Defeat ALS - Fall 2021
Boston Walk to Defeat ALS - Fall 2021
Keep an eye on your email and our social media for updates on website launches and registration openings as well as date and location updates!
Is your company interested in getting involved with our chapter or events?
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].
Research Study Opportunity
Are you a healthy volunteer or person living with ALS?
Help researchers at the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH), learn about fatigue in ALS by participating in this fully remote, survey only, study!
Dysphagia Friendly Recipe of the Month: Lemon and Ginger Cheesecake
Though citrus fruits are available and in season year round, winter is their time to shine! Make this refreshing IDDSI Level 4 lemon and ginger cheesecake from Oak House Kitchen to enjoy at home.
Make sure you're following us on social media to keep up to date on everything happening with our Chapter: