CEO Soak: Boston 2022 Registration is Now OPEN!

We're starting off the new year with the launch of our 2022 CEO Soak: Boston!

The CEO Soak builds off of the legacy of The Ice Bucket Challenge, quickly growing to become one of the premier corporate engagement opportunities and entertaining events for The ALS Association Massachusetts Chapter.

Don't forget to watch our video from our 2021 CEO Soak to get a taste of everything this fantastic event has to offer!

Anyone can participate! This event engages corporate and community leaders to get soaked while raising funds and awareness for The ALS Association Massachusetts Chapter.

Join our 2022 CEO Soak: Boston Now

Do you have questions about CEO Soak: Boston? Contact [email protected] for more information.

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Info on Other 2022 Events Coming Soon!

We're deep in the planning phases for our 2022 Events and are excited about all to come throughout the rest of this year. Stay tuned for more information on how you can get involved!

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 Ashley Carrier

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Stress & ALS Box Logo

REGISTER NOW for Our Beyond My Battle February Series for People Living with ALS

You're invited to sign up for a 3-part virtual workshop series for those living with ALS to manage stress, compassionately cope with difficult emotions, and nurture supportive relationships.

  • Workshop 1: Understanding Stress (February 7, 6:30-7:15 pm EST)
  • Workshop 2: Mindful Communication (February 14, 6:30-7:15 pm EST)
  • Workshop 3: Everyday Mindfulness (February 21, 6:30-7:15 pm EST)
  • *Group Discussion (February 21, 7:15 pm ET)

Even if you cannot attend on the dates of the workshops, we invite you to still register to receive materials and recordings. Workshops 1-3 will be recorded and distributed to all registrants. Attendees are welcome to bring a caregiver for assistance. Closed captions provided.

*Please note that the Group Discussion will gather immediately following the 3rd Workshop and there is no need to register. This discussion will not be recorded or distributed. 

Please contact [email protected] with any questions and for more information. Space is limited so register now to secure your spot!

Click Here to Register

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January Debbie Petrovsky Poetry Newsletter 2022

Debbie Petrovsky Poetry: January Feature

Debbie Petrovsky, a woman living with ALS in Massachusetts, is back this month with a new piece of poetry. You don't want to miss this emotional look into her daily journey with ALS - click the link below to read this month's poem.

Read Debbie's January Poetry Here

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ALS Smart Phone Study Healey Center 2021

Do you have ALS and own a smartphone? Are you interested in advancing ALS research?

The Healey Center is accepting participants for a completely remote study using smartphones and wearable devices to advance ALS therapy.

Learn More and Sign Up to Participate

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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

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

Katey Burke YouTube Channel Playlist Dec E News 2021

Check Out Our Equipment Demonstrations Playlist

Make sure you out our YouTube channel, which has some great topics and resource videos covered in some of our Community Groups!

View the Playlist On Our YouTube Channel

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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].

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