ALS Ice Bucket Challenge Progress

 

Chapter Highlights

EXECUTIVE DIRECTORS PERSPECTIVE

BrinserHeadShot

 

Hello Northern New England!

I hope this message finds you well – Happy September!!

The Northern New England staff are so excited about last weekend’s Bangor Walk to Defeat that was held on August 28th! We received numerous posts on Facebook, and it was so much fun to see everyone enjoying their walk! We received pictures from some that were walking in their own community as well as some that walked the Tribute Walk. Thank you to everyone that participated in the Bangor walk for helping us to raise awareness as well as funds as we fight to find cures and treatments for ALS.

Now, all eyes on Portland that is coming up on September 11th! We are so excited that we are partnering again this year with WGME! As some of you may remember, they partnered with us a couple of years prior to the pandemic. We are so pleased that they agreed to work with us again in 2021. But you want to know the best part? Not only are we partnering with WGME, but Kim Block will be this year’s emcee for the Portland Walk!!! We are over the moon excited and we hope you are too!

Then, after Portland, we will be focused on the Vermont Walk on September 25th and New Hampshire on October 9th. For more details, scroll down to the development section. And, if you still have questions, don’t hesitate to reach out to Karrie Boskee. Karrie is a wonderful resource to all our participants and can answer your questions. She can be contacted at kboskee@alsanne.org or at 360-219-5842.

The Care services team is working hard on the annual ALS Symposium! This year, our symposium is being held on October 22nd. Mark your calendars – this will be an informative one-day event that you won’t want to miss. More details to be provided in the next several weeks.

As always, if you have any questions or comments, please contact me.

Best,

Mauret Brinser
Executive Director
(603) 219-0522

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

SAVE the DATE

Friday October 22 – Annual ALS Symposium: We have a great line up of topics and speakers! Learn about ALS research, multi-disciplinary care, durable medical equipment, symptom management and more. We will be hosting this event virtually.

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 the wisdom and experience from living with ALS.

For Family Caregivers and Care Partners only
2nd Tuesday of the month
September 14
Time: 1:00 pm - 2:30 pm

For People living with ALS, Family & Friends
2nd Thursday of the month
September 9
Time: 1:00 - 2:30 pm

3rd Wednesday of the month
September 15
Time: 1:00 - 2:30 pm

3rd Thursday of the month “Drop-in Group”
September 16
Time: 10:00 - 11:00 am

4th Wednesday of the month
September 22— C A N C E L L E D
Time: 10:00 - 11:30 am

For People Living with Bulbar ALS
Communication Device users encouraged to join
4th Tuesday of each month
September 28
Time: 10:30 am - 12:00 noon

Share your wisdom and take some wisdom away.

WEBINARS

Eligibility and Enrollment into Medicare, Medicaid, and Other Insurance
Monday, September 20
2:00-3:00 pm
Choosing insurance is a big decision and should be considered carefully based on your unique medical needs. Our guest speaker with Patient Advocate Foundation will share tips on selecting the best plan for you, eligibility and open enrollment periods and how to navigate benefits for best possible results.

Register
After registering, you will receive a confirmation email containing information about joining the webinar.

Looking for more online information? Try the Connecting ALS Podcasts – a variety of episodes on different topics
https://www.connectingals.org

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

Our federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission of The ALS Association.

     • Accelerate Development, Approval and Access to Effective New Treatments
     • Increase Federal Funding for ALS Research
     • Permanently Extend Access to Telehealth for People Living with ALS
     • Provide High-Quality, Affordable, and Accessible Health Care
     • Increase Veterans Benefits for People with ALS and their Families

Become an Advocate: https://als.quorum.us/register/ and make your voice heard!

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, excellent condition. Contact Laurie at 207-494-8000.
Warming mattress cover, excellent condition. Contact Karin at 802-662-4809
Neck pillows and supports, excellent condition. Contact Karin at 802-662-4809.

FOR SALES
Reclining lift chair-Scarborough ME $300. Contact Laurie at 207-494-8000.
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
603-8231-2355

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

DEVELOPMENT

2021 WALK TO DEFEAT ALS

We are officially in Walk season!! Below are some answers to frequently asked questions, and we’re excited to share the success of the Bangor Walk to Defeat ALS, which took place on August 28th.

1. When is the Walk?
Walk Your Way on any day of your choice or walk the self-led Tribute Route any time while the tribute signs are up (see below for a list of location and date information). Tune in to our Facebook page at 10am on the Saturday of your Walk for Opening Ceremonies, which will include messages from teams, community supporters, staff, and more. We'll also email a link to the video afterwards. Facebook: https://www.facebook.com/ALSA.NorthernNewEngland

Portland, Maine
Payson Park (Detailed location to follow)
Tribute Route: Thursday, September 9th through Saturday September 11th, 8 a.m. to 6 p.m.

Burlington, Vermont
Burlington Waterfront (Detailed location to follow)
Tribute Route: Thursday, September 23rd through Saturday, September 25th, 8 a.m. to 6 p.m.

Concord, New Hampshire
Rollins Park
Tribute Route: Thursday, October 7th through Sunday, October 11th, 8 a.m. to 6 p.m.

2. Will Walk to Defeat ALS be Virtual This Year?
Yes! For the safety of our community, Walk to Defeat ALS will continue to be an online experience this year and we hope we can be together again soon. Teams and participants are encouraged to Walk Your Way from wherever you call home, a favorite trail, at the beach - you choose. For awareness and support, tribute signs will be placed along the routes listed above for those who wish to walk at a self-led Tribute Route.

3. What is a Tribute Route?
The self-led Tribute Route is a NEW way for teams to Walk Your Way. Instead of a one-day event, tribute signs will be placed along pre-determined and accessible walking routes. The tribute signs will include messages of honor, love, support, and other dedications for those in our ALS community. Those who wish to walk at a Tribute Route location do so at their own discretion. The Tribute Route locations are public, and participants are expected to abide by CDC, state, local, and park guidelines.

4. Where do I Send my Walk to Defeat ALS Pictures?
Send them to us on Facebook, tag us, email them to kboskee@alsanne.org, or text them to 360-219-5842.

5. Where do I Send Donations?
Donations can be sent to our office using the pledge envelope in your Walk Box or using one of your own.

The ALS Association Northern New England Chapter
PO Box 207
Concord, NH 03302-0207

Remember ALS doesn't stop, so neither can we, and fundraising can still take place after the Walk!

BANGOR WALK TO DEFEAT ALS

Throughout August, individuals and teams throughout Maine walked in tribute to those throughout our ALS community. We were honored to see pictures from how you Walked Your Way and to see our ALS community enjoying the self-led Tribute Route along the Bangor Waterfront. Whether it was along a trail, on a farm, along the beach, or at the Tribute Route, these amazing teams raised much needed awareness and funds so that we can DEFEAT ALS!

Sept News Pics Bangor Walk.png

Thank you so much to the following community partners for their support of our ALS community and the Bangor Walk to Defeat ALS:

Presenting Partner: The Jackson Laboratory

Walk Partners: Camden National Bank and First National Bank
Media Partner: WABI-TV5
Volunteer Partners: The Jackson Laboratory and Bangor Savings Bank
National Partners: Numotion, Permobil Foundation, and Mitsubishi Tanabe Pharma
Volunteer Event Lead: David Doane, Team Captain of Mission Possible

Additional thank you goes to the following teams, who assisted with Tribute Route logistics:

Mission Possible, led by David Doane
Bridget Stanton, friends, and family and Team Battle Buddies, led by Allison Jack

MEET OUR TOP NORTHERN NEW ENGLAND WALK TEAMS AS OF AUGUST!

Bangor, Maine
1. Mission Possible, led by Team Captain David Doane
2. Tamurai’s Adventure #rockinALS, led by Team Captain Tammy Michaels
3. Neuromusculomics, led by Team Captain Dr. Gregory Cox

Portland, Maine
1. Team Grateful, led by Team Captain Linda Piper
2. Team Bruce, led by Team Captain Bruce Daman
3. Churchill’s Champions, led by Team Captain Cindy Churchill

Vermont
1. Kelly’s Krusaders, led by Team Captain Sherry Westcom
2. Team Hoot, led by Team Captain Megan Huth
3. Captain Courageous, led by Team Captain Jennifer Hinman

New Hampshire
1. Team Call, led by Team Captain Annette Call
2. Lou’s Crew, led by Team Captain Liliana Arcidy
3. Claire’s Bears, led by Team Captain Robert Carty

Thank you for making a difference by participating in Walk to Defeat ALS!