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 People living with ALS, Family & Friends
1st Wednesday of the month from 1:00 pm - 2:30 pm
August 3rd
September 7th
3rd Wednesday of the month from 1:00 pm - 2:30 pm
August 17th Featured speaker-Brenda Lovely, Respiratory Therapist
September 21st
3rd Thursday of the month from 10:00 am - 11:00 am
August 18th
September 15th
For People Living with Bulbar ALS
Softer paced group using Zoom chat feature & communication devices
4th Tuesday of each month from 11:00 am - noon
August 23rd
September 27th
For Family Caregivers and Care Partners only
2nd Tuesday of the month from 1:00 - 2:30 pm
August 9th
September 13th
2nd & 4th Tuesday of the month from 7:00 - 8:00 pm
August 9th and 23rd
September 13th and 27th
Do you have a question or topic you would like covered in a Connection Group? Talk with your Care Coordinator about special presentations.
WEBINARS:
Every Word Counts: Voice and Message Banking for People With ALS
Monday, August 15 at 2:00 p.m. ET
Register here
Alisa Brownlee, ATP, CLIPP, CAPS, WSP discusses the features and benefits of both voice and message banking for people living with ALS.
After registering, you will receive a confirmation email containing information about joining the webinar.
RESEARCH
THE NATIONAL ALS REGISTRY: 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. Join here: https://www.cdc.gov/als/ALSJoinALSRegistry.html.
ADVOCACY
Our advocacy work focuses on educating and mobilizing members of Congress and the Administration in a nonpartisan way to achieve our mission of discovering new treatments and a cure for ALS, and to serve, advocate for and empower people living with ALS to live their lives to the fullest. Become an ALS Advocate: https://www.als.org/advocacy
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.
Durable Medical & Communication Equipment Loan Program
Need a piece of durable medical equipment? Don’t forget to talk to your Care Services Coordinator about the Equipment Loan program. We have an array of items. Care Service Coordinators will arrange for delivery with our Durable Medical Equipment Partners
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 provides this information as a service to our members and is not liable for any direct, indirect, incidental, or consequential damages arising in connection with the purchase or donation of items listed.
FOR SALE
Jazzy Air 2-power wheelchair in Maine. 18" SEAT - Blue with joystick on right-hand side and a swing-away arm. Original price $4,000. Asking $3300.00 Contact Laurie for details. laurie.mcfarren@als.org
DEVELOPMENT NEWS
2022 WALK TO DEFEAT ALS
BANGOR WALK TO DEFEAT ALS
It’s finally here, the 2022 Bangor Walk to Defeat ALS!
On Saturday, August 27th, our ALS community will come together to participate in the 2022 Bangor Walk to Defeat ALS, and we’re excited to share that we will be returning to in-person events this year!
Join us and see you are not alone in this journey. ALS has touched many lives throughout our ALS community. By taking part in the Walk to Defeat ALS, you will help us create awareness toward our common goal of defeating ALS.
What will the Walk look like?
Option 1: In Person. Join us in person on Saturday, August 27th, and at a new location! Thanks to the collaborations of Bangor Parks and Recreation and the management company of Cross Insurance Center, we are being hosted on the green at the Cross Insurance Center. From the green, we will enjoy a walking route down along the waterfront (one and two mile options), before being welcomed back by a celebration crew from The Jackson Laboratory. Upon return, we’ll have music, food, activities, and more!
Option 2: Walk Your Way. Walk Your Way is the virtual Walk solution to still raise awareness and funds for our ALS community without gathering in person. Teams utilizing Walk Your Way are encouraged to create your own Walk Day activities and participate by submitting your pictures and/or videos, where you’re walking, why you’re walking, how you’re celebrating, etc. Teams can Walk Your Way on the actual Walk Day, or any time before or after. Send us your picture on Facebook or email them to Nick.Marold@ALS.org.
Register to Walk at http://web.alsa.org/Bangor2022
SHOUTOUT TO TEAMBERNIE!
During July, the Bangor Walk to Defeat ALS celebrated Team Week. Please join us in celebrating TeamBernie, winners of one of the daily challenges! Susan, from the Bangor Walk to Defeat ALS and TeamBernie, shared this message:
“My friend Bernie and I visit with each other every Wednesday. And even with the struggles that living with ALS presents him, he is still one of the most uplifting people I know. And the smiles we share are a gift. To both of us.”
TeamBernie is lovingly joined by many friends and family members who walk in honor of Bernie and who are coming together to Unlock ALS.
WALK DETAILS
Registration is open for all four Northern New England Walks to Defeat ALS, being held in Bangor, Portland, Vermont, and New Hampshire. Sign up today as an individual walker or gather your family, friends, and co-workers to start your team.
Bangor, Maine
http://web.alsa.org/Bangor2022
Saturday, August 27, 2022
Portland, Maine
http://web.alsa.org/Portland2022
Saturday, September 10, 2022
Vermont
http://web.alsa.org/Vermont2022
Saturday, September 24, 2022
New Hampshire
http://web.alsa.org/NewHampshire2022
Saturday, October 8, 2022
For help, questions, or more information, contact us!
Nick Marold, Event Manager (Maine)
nick.marold@als.org
Karrie Boskee, Event Manager (New Hampshire, Vermont)
karrie.boskee@als.org
In June, colleagues, friends, and family of Markel Corporation came together to raise funds in memory of Jamey Masingill, a beloved colleague that they lost to ALS five years ago that month. Jamey was described as a leader, a mentor, a friend, and someone who could always make you laugh. A ‘gleam in his eye’ usually meant he was up to something.
The ALS Association was honored to receive the generous donations from this fundraiser in memory of Jamey, in addition to an incredibly generous matching gift x 3 from Markel. These funds will help us continue providing care at no cost to our ALS community, in addition to helping fund research and advocacy so that we can urgently find a cure to Defeat ALS.
“If a cure had been found earlier, Jamey may still have been here with us today. We hope that in the future others will have the opportunity to survive this devastating disease.” Karen, Markel Corporation
Please join us in thanking the Markel Corporation and the many who were touched by Jamey’s presence in their lives.
UPCOMING EVENTS
STEPHANIE SCHEHL 6TH ANNUAL ALS FUNDRAISER
Join us at Stonebridge Country Club in Goffstown, New Hampshire on August 19th for a day of golf, food, and fun while we celebrate the life of Stephanie Schehl and raise money for a great cause. All proceeds will be donated to The ALS Association Northern New England Chapter in an effort to help fund research for ALS treatment and a cure. For more information, visit http://web.alsa.org/goto/Schehl2022 or als-sucks.com.
1ST ANNUAL PUTT FOR ALS GOLF CLASSIC
On Monday, August 29th, Heaven Sent Home Care & Staffing Solutions will be hosting the 1st Annual Putt for ALS Golf Classic, benefitting The ALS Association Northern New England Chapter. Join us at Sky Meadow Country Club for a fun day of golf, tournament awards, and the chance to win a NEW CAR, generously donated by Peters of Nashua.
To register or for more information, contact Travis Dumont at travis@heavensenthc.com or 603-459-8358.
2ND ANNUAL SHEEHAN PHINNEY SUIT SPLASH
For the second year, Sheehan Phinney will be hosting a Suit Splash to raise awareness and funds for ALS. Taking place at the Delta Dental Fisher Cat Stadium in Manchester, NH, the Suit Splash will be held on August 19 at 1:00 p.m.
The law firm is challenging other local businesses to join them in the splash. If you're interested in participating, please register on the website or contact Jill Dupont!