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 amber.stalker@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
June 1, 1:00 pm - 2:30 pm

3rd Wednesday of the month—Afternoon
June 15, 1:00 pm - 2:30 pm

3rd Wednesday of the month—Evening
June 15, 6:30 pm - 7:30 pm

3rd Thursday of the month—Drop In Group
June 16, 10:00 am - 11:00 am

For People Living with Bulbar ALS
Softer paced group using Zoom chat feature & Communication Devices
4th Tuesday of each month
June 21, 11:00 am - 12:00 noon

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

2nd and 4th Tuesday of the month
June 14 and June 28, 7:00 pm - 8:00 pm

WEBINARS:
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
Sign up for the Research Matters Newsletter here: https://www.als.org/research-matters

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 serving, advocating for and empowering people living with ALS to live their lives to the fullest.
The ALS Association is aggressively advocating for legislative priorities that will help to:
   • Find New Treatments and Cures
   • Optimize Current Treatments and Care
   • Prevent or Delay the Harms of ALS
See more here: https://www.als.org/advocacy/our-priorities

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 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.

FREE
Wheelchair lift, Mid Coast Maine. Contact Laurie at 207-494-8000.
Fully electric hospital bed, Mid Coast Maine. Contact Laurie 207-494-8000.
Over toilet commodes, hospital bed and mattress, power wheelchairs and manual Hoyer as the Vermont Loan Closet right sizes its collection. Must be able to pick up items by June 10 in Burlington. For full list and info contact Karin at 802-662-4809.

FOR SALE
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. Asking $3,300.00. Joystick on right-hand side and a swing-away arm. Contact Laurie: 207-494-8000.

Pride Mobility Quantum 6 Edge complex Rehab power wheelchair with elevating seat and power tilt recline. New in Asking $2600. Contact Karin 802-662-4809.

DEVELOPMENT

2022 WALK TO DEFEAT ALS

NEW HAMPSHIRE, WE HAVE AN EXCITING UPDATE FOR YOU!
We are excited to share that the New Hampshire Walk to Defeat ALS will be kicking off at a new location this year, the Fisher Cats Stadium! We are looking forward to meeting you at the baseball stadium amongst our community partners before we walk along a portion of the Manchester Rail Trail in tribute to our ALS community.

This venue has been made possible with the collaboration of the Northeast Delta Dental Stadium and the Fisher Cats. Stay tuned for more details!

Northeast_Delta_Dental_Stadium-RESIZEjpg.jpg

MAINE, THE CALENDAR RAFFLE IS BACK!
Back by popular demand, ticket sales for the Calendar Raffle to benefit the Bangor Walk to Defeat ALS are now LIVE! This year’s Calendar Raffle features some exciting prizes, such as two tickets to a 2022 Waterfront concert, ½ day fishing on the Penobscot, gift cards, cash prizes, and more. For more information and to purchase raffle tickets, visit the Bangor Calendar Raffle team page or contact Karrie Boskee at karrie.boskee@als.org.

CALL TO ACTION, IN-KIND VENDOR DONATIONS NEEDED!
We are looking for connections at the following companies: Lake Champlain Chocolates, Lindt Chocolate, Stonyfield, Coca-Cola, Blake’s Ice Cream, Hayward’s Ice Cream, Stonewall Kitchen, Oakhurst Dairy, Bar Harbor Foods. If you have a connection at any of these companies or any other companies who may be willing to support our events, please email karrie.boskee@als.org.

STEPHANIE SCHEHL 6TH ANNUAL ALS FUNDRAISER
Come join us at Stonebridge Country Club in Goffstown, NH 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, http://web.alsa.org/goto/Schehl2022 or als-sucks.com.

THE JACKSON LABORATORY
Thank you to The Jackson Laboratory for joining us in the fight to end ALS for the second year in a row. Jackson Laboratory is committed in the fight to end ALS in the research they do and the work we do to support pALS, caregivers and their families by providing critical funds in support of our mission.

Thank you The Jackson Laboratory!

JaxLabsLogo.JPG

MEET OUR TOP TEAMS SO FAR!
Bangor, Maine

Bangor Calendar Raffle
Fighting for Farmer George
Team JAX

Portland, Maine
HD Warriors
Tonie’s Team
Walking Buddies

Vermont
Team Williams
Kelly’s Krusaders

New Hampshire
Claire’s Bears
Special K
Maureen’s Team

LOOKING FOR YOUR LOCAL WALK?
Below you will find the dates and links to each of Northern New England’s four Walks. By clicking the link to your local Walk below, you will be taken to the event page, where you can register yourself and/or team. If you need any help with registration, or if you would like us to activate your team from last year, please don’t hesitate to reach out to Karrie Boskee, Event Manager, at karrie.boskee@als.org or 360-219-5842.

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