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Happy Holidays from The ALS Association Massachusetts Chapter Dec 2021

Happy Holidays!

From all of us at The ALS Association Massachusetts Chapter, we wish for you and your family to enjoy all the warmth this season has to offer.

May the joy of the holidays shed light, hope, and fill your hearts with peace.

To make a holiday gift to our Chapter so that we can continue with our ongoing mission of serving Massachusetts ALS families with ALS, supporting research, and participating in ALS advocacy, click the button below. 

Donate To The ALS Association Massachusetts Chapter

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Massachusetts Events Coming Soon 2021 Dec ENews

Info on 2022 Events Coming Soon!

We're deep in the planning phases for our 2022 Events and are excited about all to come next 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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Register Now Symposium Massachusetts 2021

REGISTER NOW for Our Virtual Massachusetts ALS Symposium on December 14, 2021!

SPACE IS LIMITED!

We're excited to once again offer our Virtual ALS Symposium this year! Mark your calendars for December 14th and join us to learn more about research updates, advocacy efforts in research and expanded access, and more! Our special guest lineup includes:

Dr. James Berry, MD, MPH
The Healy Center for ALS, MGH
2021 Research Updates & Highlights

Dr. Jinsy Andrews MD, MSc
Eleanor & Lou Gehrig ALS Center, Columbia University
Advocacy & Expanded Access to Investigational Drugs

Dr. Katharine Nicholson, MD
The Healy Center for ALS, MGH
ALS Genetics, Counseling & DIALS Network Study

Dr. Courtney McIlduff, MD
Beth Israel Deaconess ALS Clinic
Importance of Multidisciplinary ALS Clinics

And more!

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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Heidi Henson Blog Banner Dec 2021 - Frozen Branches

Welcome Back Guest Blogger Dr. Heidi Tarr Henson

We are thrilled to welcome Dr. Heidi Tarr Henson back again this month with another incredible guest blog. This month's topic is ALS and End of Life: Self Trust and the Need for a Plan. Click the button below to read more!

Read Dr. Heidi Tarr Henson's Blog Here

In collaboration with The ALS Association Massachusetts Chapter, Heidi Henson is working to form a discussion group around end of life issues. This patient centric discussion group can give a person living with ALS an opportunity to discuss questions, how you're feeling, and will be facilitated by Heidi, a person living with ALS. We're here to help each other!

Interested in joining? Click the button below.

Email [email protected]

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Debbie Petrovsky December Feature Poetry Banner 2021 SM

Debbie Petrovsky Poetry: December 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 December Poetry Here

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Stress & ALS Box Logo

Did You Miss Our Beyond My Battle Virtual Workshop?

This 3-part virtual workshop series for Caregivers focused on ways to manage stress, cope with difficult emotions, and support their loved one with ALS. You can find the recordings for a limited time:

Workshop #1 can be found HERE.
Passcode: 1PGm1=pe

Workshop #2 can be found HERE
Passcode: XDZfR?3d

Workshop #3 can be found HERE
Passcode: Qhgg8^f7

Are you a person living with ALS and looking for ways to manage stress and cope with difficult emotions? We’re partnering with Beyond My Battle to provide a program specifically for YOU in February! Stay tuned for more information!

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Hope Seeley Newly Diagnosed Program Flyer January 2021

Presenting: Hope Seeley Beyond the ALS Diagnosis: Taking a Practical Approach

For People Newly Diagnosed with ALS

Come learn more about the next steps, resources, supports, insurance, research, and meet others after being newly diagnosed with ALS.

Join us on Virtually on Wednesday Mornings:

10:30AM - 12:00PM
January 5th
January 12th
January 19th
January 26th

Contact your Care Services Coordinator or click the button below to contact our Care Services team with any questions and to see if this program is right for you!

Contact Care Services

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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

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

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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