ALS Ice Bucket Challenge Progress

 

Chapter Highlights

EXECUTIVE DIRECTORS PERSPECTIVE

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Hello Northern New England!

As I write this month’s Executive Director section, we are clearing out from our first major snowstorm of the year!  It has been a really calm winter until now.  It is so pretty to see the snow!

February marks a new fiscal year for the Northern New England Chapter.  We are busy wrapping up our financials for 2020 and actively building our plans for 2021.  Outwardly, February tends to be a pretty quiet month, but there is a lot of activity going on “behind the scenes”.  This is always the time of year that we are building internally; the development team is working on the 2021 walk websites; the entire team is working on the 2021 Operational Plan; and the staff are assessing and documenting accomplishments/areas of improvement from the previous year.  All activities that are going to help us maneuver 2021 and the continued impact of COVID-19.  As always, we will update you on these activities, right here, in our monthly newsletter!

It is hard to know when we will be able to venture out again without fear of exposure to COVID-19.  But we learned a lot in 2020 about our ability to support our families in ME, NH and VT, virtually.  With that strong foundation of knowledge, you can expect to see new opportunities in the next few months.  And, as soon as we can gather safely, we will be out in our communities.  We can’t wait until we can see you all again in person!

As always, we are here for you – whether we connect by phone, e-mail or Zoom. 

Be safe and take care!

Best,

Mauret
(603) 244-0484

 

DEVELOPMENT

2021 WALK TO DEFEAT ALS

The Northern New England Chapter is working closely with our local health officials, state offices, and venues in assessing the potential for in-person events for the Fall. As always, the safety of people living with ALS, our event participants, volunteers, and partners are our #1 priority. Though we are uncertain if we will be able to host in-person events in the fall, we encourage you to register in the coming month for our Walk to Defeat ALS.  We are planning some fun activities, including various challenges where you can win a prize as well as connect with others and share why the walk is important to you.  ALS doesn’t stop, and neither do we!

Tentative - Save the Dates for 2021 Walks to Defeat ALS!

Bangor, Maine
Saturday, August 28, 2021
Team Kickoff Week will be the week of June 1st

Portland, Maine
Saturday, September 11, 2021
Team Kickoff Week will be the week of June 14th

Vermont
Saturday, September 25, 2021
Team Kickoff Week will be the week of June 28th

New Hampshire
Saturday, October 9, 2021
Team Kickoff Week will be the week of July 5th

Volunteers needed! 2021 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 2021 Walks, please contact Karrie Boskee, Event Manager, at kboskee@alsanne.org or 360-219-5842.

Our corporate partners help make our Walks successful!

We’re thrilled to welcome The Jackson Laboratory as sponsors for the Bangor, Maine Walk to Defeat ALS. Please join us in thanking them for their support by visiting their Facebook page and leaving a message!

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For information about corporate collaborations, please contact Donna Stevens, Director of Fundraising and Events, at dstevens@alsanne.org.

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

Connection and Resource Groups

Groups provide peer networking and education around a variety of topics. Most groups are open to all. Access as many open groups as you would like! Connection groups are a great resource to maintain control over our lives, to give and take the wisdom and experience from living with ALS. RSVP to a Care Services Coordinator to get the Zoom link or phone connection.

For Family Caregivers and Care Partners only
Tuesday, February 9
Time: 1:00 pm - 2:30 pm

Thursday, February 11
Time: 1:00 - 2:30 pm

Wednesday, February 17
Time: 1:00 –2:30 pm

Thursday, February 18
Drop in Group - a short and sweet group
Time: 10:00 - 11:00 am

Wednesday, February 24
Time: 10:00 am - 12:00 pm

New Group: For People Living with Bulbar ALS (SGD or Communication Device users encouraged to join)

Tuesday, February 23
Time: 10:30 am –12:00 pm

Webinars

Respiratory Care Video Series Now Available Online

We are pleased to announce the addition of a new resource available for the ALS community, developed to introduce and explain the complicated topic of breathing changes in ALS. A series of short videos cover the many ways respiratory function may be affected by ALS, strategies to manage changes that occur and the role of the various members of the multidisciplinary clinic team related to breathing.

Find videos on our YouTube Channel:
 go to YouTube> ALS Association Northern New England Chapter. Find them under PLAYLISTS:

Research

ALS FOCUS SURVEY 3:

ALS caregivers – we want to hear from you! The ALS Focus survey on caregiving is now open. Share your opinions and perspective about the everyday challenges of being a caregiver of a loved one with ALS. It only takes 10 minutes and all data collected will be open and free to the entire ALS community. https://www.als.org/als-focus #ALSFocus

• Caregiver Lab—instructional videos on transfers, body mechanics and safety
• Symposium 2020—Recordings on Research, Smart Home Options, Respiratory Strategies
• Home Modifications, Symptom Management, Coping with Difficult Emotions, Mindfulness and Stress Reduction

Advocacy

Boost in Funding Needed for ALS Research This Year

Check out the Blog for updates on Advocacy: https://www.als.org/blog/boost-funding-needed-als-research-year

Paul Larochelle Quality of Life Grant Program

Our Quality of Life Grant program is making a difference for people with ALS from all three states in our Northern New England Chapter.  From enhancing communication for a person losing speech, to helping with a lift chair for a person with changing mobility, grants of up to $500 are filling gaps.  Quality of Life grants also send a message that The ALS Association is with you, empowering you to live as fully as possible.  All requests are subject to the availability of funds at the time of submission. 

FREE AND FOR SALE ITEMS

Although we have no free and for sale items this month, please connect with your Care Services Coordinator if you are looking for equipment.