ALS Ice Bucket Challenge Progress

 

Chapter Highlights

EXECUTIVE DIRECTORS PERSPECTIVE

Mauret Brinser Executive Director

Hello Northern New England!

I hope this message finds you all well and enjoying the start of September! Where did the summer go?

As I write this, the Northern New England Team is celebrating the success of the Bangor Walk to Defeat ALS event that was held on August 29th and preparing for Portland, scheduled for September 12th. The Bangor walk was a big event for us because it was the first virtual walk that any of us have ever done. Chapters across the US are all experiencing this new way of putting on a walk event. We had the benefit of learning what worked and didn’t work through their events and taking their successes and incorporating them into our walk events. But as everyone knows, each walk has its own feel and the development team is working hard to make sure we keep that element in each of our virtual walks.

The Bangor Walk to me has always been a small community event where people come back year after year, supporting each other and raising awareness for ALS. There is a feeling of “community” and “togetherness” that I don’t feel from other walks. It was this component that Karla and David Doane worked so hard to incorporate virtually – and they succeeded! Familiar faces were seen on the screen, while others chatted into Facebook Live. We heard from people on why they walk as they endured the rainy day – and it was special knowing that all of us were raising awareness in our own communities scattered across Maine and New Hampshire. Congratulations to Karla and David for successfully building and executing a virtual Bangor Walk!

Some may ask, why virtual? Why not just cancel the walk season for 2020? In all honesty, we never considered that as an option for several reasons. First, people in Maine, New Hampshire and Vermont look forward to walk season every year to raise awareness and support each other in the fight against ALS. All of us would much rather gather in person, but obviously for safety reasons, we could not. Second, we believed that these events could be successful in a virtual setting – it was the next best thing to holding in person events. Our walkers could gather virtually, see each other and connect and continue the fight again ALS. Lastly, we are all committed to providing as much support as possible to those impact by ALS in ME, NH and VT. To continue that support, we must continue to raise the funds that are used to keep our current programs and services going. With anticipated loss in revenue predications as high as 65%, we knew that we needed to do as much as possible because our ALS community is counting on us.

Thank you to all of you that have continued to support The ALS Association Northern New England Chapter. We are in strange times right now, trying to move forward in light of a pandemic. But, please know we are grateful to you for all your support and all of us look forward to a time that we can gather once again without fear of COVID-19.

Best,

Mauret
(603) 244-0484

CARE SERVICES

Watch your mailbox for Care Services News

We mail hard copies to all people with ALS in Maine, New Hampshire and Vermont who are registered with our chapter. If you live apart from your loved one with ALS, contact your state care services coordinator to receive a copy by email.

Call your Care Services Coordinator for more information on Chapter Services
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

Virtual ALS Symposium

We will be hosting a virtual symposium series complete with a resource EXPO! All of this from the comfort of your home.Topics will include Research, Symptom Management, Home & Environmental Adaptations, Nutrition, Respiratory Strategies and more.

The EXPO will include exhibitors from across the Chapter!

Watch for more details:
Fridays: October 16, 23 and 30
Morning sessions: 10am to 12 pm
Afternoon sessions: 1:00-2:30 pm

Connection and Resource Groups

Our move to virtual groups has taken hold. Connection and resource groups provide information and peer networking. Most groups are open to all. Attend a single session or often as you like. To attend a group, RSVP to the Care Coordinator Contact for each group you are interested in. You will then receive an internet link and call information for the meeting.

For Family Caregivers and Care Partners

Day: Tuesday, September 8
Time: 1:00 pm - 3:00 pm
Contact Karin: khammer-williamson@alsanne.org

GENERAL GROUPS: These groups are open to all:

Wednesday, September 9
Time: 1:00 pm - 3:00 pm
Contact Laurie: lmcfarren@alsanne.org or 207-494-8000

Thursday, September 10
Time: 1:00 pm - 3:00 pm
Contact Laurie: lmcfarren@alsanne.org or 207-494-8000

Thursday, September 17
Time: 10:00 am - 11:00 am
Topic: Drop In Group—a short and sweet encouragement group
Contact Karin: khammer-williamson@alsanne.org or
802-662-4809

Wednesday, September 23
Time: 10:00 am - 12:00 pm
Contact: Amber: astalker@alsanne.org or 603-226-8856

Webinar

Dining Health: How You Eat, When You Eat and Who You Eat With
Monday, September 21, 2020
2:00pm ET
Register

Our guest speaker, Dr. Reva Barewal, is a dentist specializing in advanced oral health conditions, a trained chef, and leading expert on dining enjoyment for people with dysphagia. Join us to learn more about Dining Health - the environment we create to improve the eating experience.

Research Update - ALS Focus

ALS Focus is a patient- and caregiver-led survey program that asks people with ALS as well as current and past caregivers about their needs and burdens. Every step of the survey development process is informed and reviewed by a committee of people with ALS and caregivers.

The goal is to learn as much as possible about individual experiences so that the entire community can benefit. All information collected is de-identified and shared free of charge to everyone, which provides The ALS Association, researchers from all over the world, and other organizations working on ALS with accurate information around the disease journey.

This will help us strengthen care for people with ALS and caregivers, accelerate therapy development, improve clinical trials, influence policy makers, and more. All data can be combined with other studies, including the National ALS Registry, through a global unique identifier (a de-identified code for each participant). Participants will also get access to the survey results.

Sign up for ALS Focus by visiting www.ALSFocus.org to register and complete an initial demographics survey. For more information, visit www.als.org/als-focus/.

Advocacy

Sign up to be an ALS Advocate today at https://als.quorum.us/register/
Ask your friends and families to sign up too!

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.uality 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

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.

For Sale:
Contact Karin for more information on the following item in Vermont: khammer-williamson@alsanne.org or 802-662-4809:
2009 Dodge Van, 125,000 miles (incl new brakes, muffler & 4 studded snow tires) & compatible Drive Scout electric scooter: $7900.

Contact Laurie for more information on these items in Maine: at lmcfarren@alsanne.org or 207-494-8000:
SAVARIA stair lift, like new: $1,000
2012 Dodge van, BraunAbility package with fold-out, side ramp.
2004 Ford 150 Econoline camper special with a lift installed.
Invacare Matrx Elite motorized wheelchair with tilt function. Heavy duty tires for moderate outdoor use. Upper body harness and recharging station included. Maximum patient weight 250 lbs. Excellent condition: $500.

DEVELOPMENT

2020 WALK TO DEFEAT ALS

THANK YOU to everyone who joined us for the Bangor, Maine Walk to Defeat ALS on Saturday, August 30th. We enjoyed connecting via phone and video with many throughout the ALS community, and many sent us pictures of their teams, keys for why they walk, and ways that they were celebrating. Check out our Facebook page for more pictures and highlights at https://www.facebook.com/ALSA.NorthernNewEngland Thank you again to our generous local sponsor, Northern Light Health, our media sponsor, WABI, and our national sponsors: Numotion Foundation, Mitsubishi Tanabe Pharma America, and Permobil Foundation.

Registration is still open for the 2020 Walk to Defeat ALS events in Portland, Vermont and New Hampshire. Register today and start your fundraising efforts as an individual walker or gather your family, friends, and co-workers to start your team. Together, we will continue our commitment to #DefeatALS.

Bangor Walk to Defeat ALS - Battle Buddies

Bangor Walk to Defeat - Battle Buddies

Ideas to Walk Your Way!

We are hearing many innovative ways Walkers are planning to celebrate the Walks this year. Here are some ways that you can Walk to Defeat ALS wherever you are:

 •  Show your team spirit and post a picture or cheer with #WALKTODEFEATALS #ALSINTHISTOGETHER of you in your team t-shirt or holding a sign with your team name.

 •  Tell us why you walk!Share how you’ve “chalked your walk” – draw start and finish lines or share messages of gratitude throughout your neighborhood.

 •  Hang a Walk day poster – make a poster, color your key, hang them in your window, and tell us why you Walk to Defeat ALS.

 •  Map your route and distance – Find apps online (like Runkeeper) and share where you are walking and how far you go.

Portland – Saturday, September 12

Registration: web.alsa.org/Portland2020

Top Teams
1. Team Bruce
2. Resilient
3. Churchill’s Champions

Sponsored by: PhRMA

Questions? Contact Karla Wheaton, Event Manager, at kwheaton@alsanne.org or 207.712.3091.

Vermont – Saturday, September 26

Registration: web.alsa.org/Vermont2020

Top Teams
1. Moriah Kickin’ ALSphalt
2. Kelly’s Krusaders
3. Team Hoot

Questions? Contact Karrie Boskee, Event Manager, at kboskee@alsanne.org or 360.219.5842.

New Hampshire – Saturday, October 10

Registration: web.alsa.org/NHWalk2020

Top Teams
1. Katie and the AARP’s
2. Solution Health
3. Dartmouth-Hitchcock

Sponsored by: Dartmouth-Hitchcock Medical Center and Harvey Construction

Questions? Contact Karrie Boskee, Event Manager, at kboskee@alsanne.org or 360.219.5842.

UPCOMING EVENTS

STEPHANIE SCHEHL FOURTH ANNUAL ALS FUNDRAISER

Join the Schehl family and friends, as well as many corporate partners at the Stonebridge Country Club in Goffstown, NH for a day of golf, food, and fun. This event celebrates the life of Stephanie Schehl, and all proceeds will be donated to the ALS Association Northern New England Chapter.

     •  Shotgun start at 9 a.m. on Friday, September 11, 2020

     •  $150 per player4-person scramble formatBreakfast sandwiches, coffee, and cookout lunch included

     •  Hole-in-one prize of $20,000

     •  Putting contest, longest drive contest, closest to the pins, and more

     •  “Cheaters” package available for $25

     •  50/50 raffle tickets available for $25

     •  Hole sponsorships are $200 and include a sign and your company’s name on your own tee box

To register for the event, sponsor a hole, and/or donate, please visit www.ALS-sucks.com. For more information, contact Mitch Marchand, event volunteer, at 603-867-1558 or marchand@vybesoftware.com.

JEREMY R WILLIAMS ALS GOLF CLASSIC

The Williams Family invites you to a day of golf at New England’s only Championship Executive Golf Course, The Links at Lang Farms in Essex, VT on Sunday, September 27th. Their son, Jeremy, fought a battle with ALS starting in January 2013 and lost that battle in September 2015. Jeremy showed everyone he met the true meaning of strength, humility, and how to really smile.

This year’s golf classic will look different from the years prior. For more information, to register, and for updates, visit www.jrwalsclassic.com.

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