ALS Ice Bucket Challenge Progress

 

Chapter Highlights

CARE SERVICES

Your Care Services Coordinators – here to support you.

MAINE Laurie McFarren at lmcfarren@alsanne.org or 207-494-8000
NEW HAMPSHIRE
Amber Stalker at astalker@alsanne.org or 603-226-8856
VERMONT
Karin Hammer-Williamson at khammer-williamson@alsanne.org or 802-662-4809
Find information about other Programs and Services here: ALS Care Services Northern New England Chapter

VIRTUAL CONNECTION AND RESOURCE GROUPS

RSVP to a Care Services Coordinator to get the Zoom link or phone connection. Access any or all! Connection groups are a great resource to maintain control over our lives, to give and take wisdom and to live as fully as possible with ALS.

For Family Caregivers and Care Partners only
2nd Tuesday of the month
January 11
Time: 1:00 pm - 2:30 pm

2nd and 4th Tuesday of the month Caregiver “Cocktail Hour”
January 11 and 25
Time: 7:00-8:00pm

For People living with ALS, Family & Friends
1st Wednesday of the month “Travelling Group”
January 5
Time: 1:00 pm - 2:30 pm

3rd Wednesday of the month
January 19
Time: 1:00 - 2:30 pm

3rd Thursday of the month “Drop-in Group”
January 20 Mutual support
Time: 10:00 - 11:00 am

4th Wednesday of the month
January 26
Time: 10:00 - 11:30 am

For People Living with Bulbar ALS
Softer paced group using the Zoom chat feature and Communication Devices
4th Tuesday of each month-NEW TIME
January 25
Time: 11:00 am - 12:00 noon

Support for People living with ALS and their Care Partners

These programs are upcoming in the new year. Please contact your Care Services Coordinator for more information on schedule and registration.

Professionally Facilitate Support Group for People Newly Diagnosed with ALS
The purpose of this 4-week group is to provide an opportunity to meet in a small group with others newly diagnosed, both to share experiences and ask questions, and to gain insight into strategies for coping with this new diagnosis. A new session begins February 3, 2022

Stress-Management for People with ALS
A 3-part virtual workshop series for those living with ALS to manage stress, compassionately cope with difficult emotions, and nurture supportive relationships. This is a collaboration with the non-profit organization Beyond My Battle.
Understanding Stress: February 7, 6:30 pm
Mindful Communication: February 14, 6:30 pm
Everyday Mindfulness: February 21, 6:30 pm, followed by a group interactive discussion
You are invited to sign up even if you can't attend live. Workshops 1-3 will be recorded and distributed to all registrants: https://us02web.zoom.us/webinar/register/WN_fVN9nFiEQPSWiGhbx8ioQw

Watch recorded presentations of this year’s ALS Symposium on our YouTube Channel: The ALS Association Northern New England Annual Symposium 2021

WEBINARS:

Improving Lung Clearance with MI-E: A Guide for Patients and Caregivers
Monday January 24, 2022
2:00 p.m. ET
Register here

Jon Nilsestuen, PhD, RRT, FAARC, Professor Emeritus Department of Respiratory Care, University of Texas-Medical Branch will share information that empowers patients to get the most out of their cough therapy devices. After registering, you will receive a confirmation email containing information about joining the webinar.

Upcoming and Archived Care Services Webinars at Your Fingertips
You can find the most up to date list of Care Services Educational Topic Calls at this link. Be sure to bookmark this so that you can easily access the very latest care services webinars and information!

RESEARCH

Research Matters: New Monthly Research E-newsletter
Stay up to date with the most recent research news through Research Matters, our new monthly email newsletter focused solely on all things related to ALS research. Subscribe here and read the first issue here.

National ALS Registry: https://www.cdc.gov/als/Default.html
You can make a difference in the fight against ALS. Joining the National ALS Registry offers the chance to participate in research and be counted.

ADVOCACY

To kick off 2022, we encourage you to invite one person who cares about your ALS journey to become an advocate too! All it takes is willingness, a few minutes from time to time, internet access, and use of a smartphone, tablet or computer. As Jen, a friend, put it, “I wanted to help so much, but I am far away (from my person with ALS). This is something I can do that makes a difference. I was so proud when the SSDI elimination period was ended!” Join here click HERE

PAUL LAROCHELLE QUALITY OF LIFE GRANT PROGRAM

Our Quality-of-Life Grant program is making a difference for people with ALS in the Northern New England Chapter. From enhancing communication for a person losing speech, to helping with a lift chair for a person with changing mobility and more. The goal for this program is to assist with the expense of increased cost living with ALS. There are no income guidelines. Please contact your Care Services Coordinator for an application or with any special needs. All requests are subject to the availability of funds at the time of submission.

CARE CONNECTION

Now, when someone asks what they can do to help, the answer is "give me your email address so I can provide access to our ALS Care Connection page." ALS Care Connection is a private online calendar that can be used to support to the entire family – by organizing volunteers to take care of some of those tasks’ families describe as "falling through the cracks."

FREE AND FOR SALE ITEMS

Please note: The ALS Association Northern New England Chapter provides this information as a service to and for our members only. The ALS Association Northern New England Chapter is not liable for any direct, indirect, incidental or consequential damages arising in connection with the purchase or donation of items listed.
FREE
Wheelchair lift, Scarborough ME. Contact Laurie at 207-494-8000.
Wooden ramp in southern ME. Excellent condition. Contact Laurie at 207-494-8000.

For Sale
Power Wheelchair: Quantum Edge 3. Barely used. Asking $7,000. Contact: Laurie McFarren 207-494-8000.
Power Wheelchair: Quantum Edge 2.0 with TruBalance 3 asking $10,000. Red, never used. Contact Amber Stalker 603-226-8856.
Jazzy Air® 2 by PRIDE MOBILITY 18" SEAT – The Jazzy Air® 2 elevates 12" in just 11 seconds and drives up to 4 mph while elevated. Paid $4000.00, asking $3300. Joystick on right-hand side and a swing-away arm - (good for sitting at a dining room table) Chair is located in Maine. Contact Laurie at 207-494-8000.
Curved stair glide, Asking $1500. Located in Maine. Contact Laurie at 207-494-8000.
Lift Recliner Holden “Golden Cloud” med/large. Color: hazelnut. Asking $1700.00. Never been used. Contact Amber Stalker 603-226-8856.

Please connect with your Care Services Coordinator if you are looking for equipment.

 

DEVELOPMENT

UPCOMING EVENTS

Choose Your Own Adventure, Vermont, May 14, 2022

Save the date for the very first “Choose Your Own Adventure”, a fundraising event in honor of beloved community member, Dan Jones. Dan is a coach, parent, friend, an amazing person and a beloved member of the Vermont community. In order to honor Dan and to raise much needed funds to support our ALS community and research, family and friends are hosting a unique event with numerous attractions (food, kids activities, games, etc.) and various ways to participate in Dan’s honor. Activities will start from a central location and will include things such as biking trails, hiking trails, a Jeep adventure, etc. Complete event details, such as location, time, and vendors, are being finalized this month. For more information, contact Karrie Boskee at kboskee@alsanne.org or 360-219-5842.

2022 CEO SUIT SOAK

The CEO Suit Soak is a new fundraising event for the Northern New England Chapter. This event builds on the legacy of the Ice Bucket Challenge by engaging corporate and other community leadership to get “soaked” while raising funds and awareness for our ALS community. To see the video from the 2021 event, check out your YouTube page HERE. For more information, contact Donna Stevens at dstevens@alsanne.org.

2022 WALK TO DEFEAT ALS

Stay tuned for Walk websites to be open for registration in late February or March. We’ll let you know when the websites are LIVE!

New Hampshire Event Lead – Michelle Buckland

Please join us in welcoming our Volunteer Event Lead for the 2022 New Hampshire Walk to Defeat ALS, Michelle Buckland. Michelle first joined the Walk in 2021 in honor of her dad and immediately reached out to see how she could help as a volunteer. Not only did Michelle and her sister create unique fundraising events for their team in 2021, such as virtual bingo, they also helped rally other teams throughout New Hampshire. Michelle intends to begin a mentoring program for incoming new teams to help them be successful in their Walk efforts.

Volunteers needed! 2022 NNE Walk to Defeat ALS Event Committee

We are currently filling volunteer roles for the committee, and our first planning meeting will be on Tuesday, January 19th via Zoom. If you would like more information about how you can volunteer and help shape our 2022 Walks, please contact Karrie Boskee, Event Manager, at kboskee@alsanne.org or 360-219-5842.

Tentative - Save the Dates for 2022 Walks to Defeat ALS!

We remain committed to the health of our ALS community while also recognizing the importance of coming together to Unlock ALS. In the coming months, we will keep you updated about what the 2022 Walks will look like, but until then, please consider saving these tentative dates!

Bangor, Maine
Saturday, August 28, 2022
Team Kickoff Week will be the week of June 1st

Portland, Maine
Saturday, September 11, 2022
Team Kickoff Week will be the week of June 14th

Vermont
Saturday, September 25, 2022
Team Kickoff Week will be the week of June 28th

New Hampshire
Saturday, October 9, 2022
Team Kickoff Week will be the week of July 5th