Chapter News February 2024

Big Sky Care: Nikki's Quest to Transform ALS Support in Montana

Nikki works in Montana
 

Our newest care services coordinator, Nikki, joined us last summer in the picturesque state of Montana. What sets her apart is not just her enthusiasm and commitment but the fact that she's our first coordinator to call Big Sky Country her home. Based in Great Falls, Nikki's journey has taken her over 1600 miles across Montana, addressing the unique challenges of delivering quality care in this predominantly rural state. Armed with years of healthcare experience, she understands the hurdles and is determined to make a difference.

Setting ambitious goals for herself, Nikki has already made good progress and remains committed to ensuring that individuals living with ALS in Montana receive the high-quality support they deserve. Among her primary objectives is reaching out to those underserved by the Association, aiming to provide them with the necessary support and resources.

To accomplish this, she began distributing ThinkALS tools. This easy-to-use and powerful tool helps reduce the time it takes to diagnose the disease and refer people to multidisciplinary ALS clinics. Nikki set her sights on clinics, home health facilities, hospice providers, and physicians’ offices, even extending her reach to numerous Indian Health clinics. She actively engaged with the medical communities in Great Falls, Missoula, Kalispell, Whitefish, Billings, Bozeman, Butte, Helena, and more on a statewide journey. She is also collaborating with the ALS Association team serving North Dakota and South Dakota, to ensure expedited support for those living with ALS in the far eastern parts of Montana.

When Nikki walked into the Intermountain Health Center to introduce the ThinkALS tool, it resonated deeply with a receptionist who shared her experience with a family member affected by ALS. While Nikki’s caseload started small it’s growing as she makes contacts like these throughout the state. One of her other main focuses is making sure everyone living with ALS and their families have equal access to quality care throughout the state.

However, Nikki's impact goes beyond awareness; she actively participates in the Billings ALS multidisciplinary clinic, providing support and resources. Serving as the ALS Association liaison, her responsibilities include initiating contact with new clients, distributing educational materials, providing resources, and introducing families to support groups. She is touching base with approximately three to five new clients each month. Recognizing the importance of clinics, Nikki is dedicated to establishing additional ALS Association-affiliated clinics in Montana, with plans for locations in Great Falls and Kalispell.

Expanding our equipment resources and ability to deliver equipment to the entire state of Montana is also high on Nikki’s priority list. She is establishing loan locker locations for larger items, collaborating with organizations like Clarks Orthopedics and Medical, National Seating and Mobility, Norco and others across the state. Our loan lockers house larger equipment such as power wheelchairs, patient lifts, and bathing chairs. These items are loaned to people who need them for as long as they need them at no cost.

The process of delivering medical equipment to individuals living with ALS can be quite challenging. While Nikki is establishing storage locations, she is also making connections to get equipment delivered. Norco Medical Supply is currently delivering equipment from our loan locker in Missoula to areas between Kalispell and Missoula. Clarks Orthopedic and Medical in Great Falls will serve the northern central part of Montana. National Seating and Mobility currently serves the Billings area. For transporting equipment to the far eastern corners of the state, Nikki has enlisted the assistance of Brad Mullens, ATP at Adaptive Home Modifications in Great Falls, and Richard McDowell at Mountain View Access and Mobility. Both have confirmed their willingness to transport equipment across the state whenever they are headed in that direction.

Nikki's journey is more than a professional venture; it's a heartfelt mission to make a positive impact on the ALS community in Montana. In her words, “I want everyone to have equal access to quality services in Montana.”

Discover Meaningful Volunteering Opportunities 

Volunteer - We Need You
 

You're invited! Join our free virtual volunteer interest night on February 27th from 5-5:30 pm PT, hosted via Zoom. Discover how you can make a difference in the lives of those affected by ALS in Alaska, Washington, Idaho, and Montana. We have diverse volunteer opportunities in the Development Department, Care Services, and Advocacy areas. Let us know you are attending and receive the Zoom link HERE

Can't attend, but are interested, reach out to Elena.Aguero@als.org to let us know.

YCare - Youth Caregiving: Training, Skills & Support

YCare

Join us for an exciting event focused on empowering young caregivers! At YCare, we provide training, skills, and support to help young people navigate the challenges of caregiving. Learn valuable techniques, connect with other youth caregivers, and gain the tools you need.

YCARE is a free in-person, day program, meant to educate youth, from 8-18 years old, on caregiving tasks that often come with a diagnosis of ALS. This program brings together a multidisciplinary team of clinicians to demonstrate how equipment like power wheelchairs, respiratory machines, speech devices, and adaptive utensils work. As well as training on tasks like transferring, toileting, and feeding. It also helps to improve young caregivers' social support, self-efficacy, and quality of life.

Lunch is provided.

Saturday, April 27, 9:45 to 2:30 pm at Magnolia Lutheran Church 2414 31st Ave W, Seattle, WA 98199

Get more information and register on Eventbrite.  Reach out to Megan.Braaten@als.org with additional questions.

February Holiday/Office Closure

Presidents Day
 

Third-Party Event News

Chilling for a Cause: Kula Cloth's Pyka Plunge Boosts ALS Support

Pyka Plunge 2024

Kula Cloth hosted their second annual Pyka Plunge on New Year’s Day, with a group of brave souls dipping into the chilly waters of the Puget Sound! The Kula Cloth team generously partnered with the ALS Association to start our 2024 with a $632 donation! Tyler Barham, Associate Director of Development, joined the event to share the word about the ALS cause and the important work the ALS Association does to help those impacted by this disease. It was a wonderful morning full of setting intentions for the new year, sharing stories of personal connections to ALS, and celebrating community – a big thanks to Kula Cloth for including and supporting us!

Interested in Third-Party Events?

DIY third party

Third party events are a great way to use your creativity hosting an event and donate the proceeds to The ALS Association. We provide support to make your experience enjoyable and to allow everyone to make as large an impact as possible. The people we serve have benefited from a variety of third-party events, including golf tournaments, game nights, yard sales, mountain climbing challenges, haunted houses, and benefit concerts. These events can raise from a few hundred dollars to $25,000 or more!

Have an idea? We can help build a fundraising web site for you. Put your passion to positive use and let us help spread the word! Reach out to Jen Campbell at jen.campbell@als.org to share your ideas and start a plan.

Upcoming Events

Monthly Support Groups

Support Group

We offer monthly support group meetings across the four states we serve: Washington, Idaho, Montana, and Alaska. Support groups offer a place and time for those living with ALS, their caregivers, families, friends, and loved ones to connect with each other. You are encouraged to join at any time. Support groups are always free-of-charge and no RSVP is required to attend. A closed caption accessibility feature is available during our Zoom support groups. These subtitles will help those who are hard of hearing or have trouble with the sound level on their device. Ask your facilitator if you need help accessing it.  

February update! The King County support group facilitated by Megan Braaten will be held on President's Day, February 19th at the usual time. The Alaska support group facilitated by Brooke Lavender will be postponed one day and held on TUESDAY, February 20th at 3 pm ADT.

See the February calendar to locate a group and log-in information.  **We have brought some groups back to an in-person format with virtual components.  Please check with your group coordinator for details. All on-line groups are hosted through the free conferencing platform ZOOM. As always, confirm times and log-in links on the Calendar**  

Regional Events

2024 ALS Association Fundraising Gala

 

Journey to a Cure Gala

Journey to a Cure
Saturday, May 18, 2024
5:00-9:00pm
Marriott Tacoma Downtown

This in-person event will feature a live and silent (online) auction, raffles, wine pull, a plated dinner, and most importantly, information and awareness about ALS and its devastating impact on our patients and their loved ones.

WAYS TO SUPPORT – IN PERSON AND FROM AFAR:

Buy your ticket to attend - registration is open
Bid in our online auction - Link coming soon! Bidding opens Monday, May 13
Raise your paddle to support the cause – at the event, or virtually
Donate an item to our auction
Volunteer your time or services
Help spread the word about support for the ALS Association. Invite your friends, family, and local business connections.

Get all the information at https://alsa-ec.ejoinme.org/pnwgala2024. Questions, reach out to pnwgala@als.org for answers. 

Ride to Defeat ALS: Iron Horse Trail

Iron Horse Ride

The Ride to Defeat ALS: Iron Horse Trail is a one-day gravel ride event designed to appeal to anyone who wants to challenge ALS and themselves! We offer a 70-mile route ( metric century PLUS) that is an out-and-back starting and ending at the Dru Bru in Cle Elum. We also offer a mostly downhill 35-mile route which starts at the Dru Bru in Snoqualmie Pass and ends in Cle Elum. If you want you can do something in-between if you start in Cle Elum and turn around whenever you feel ready! We also have the option for guests to attend and purchase a meal and drinks at the finish line festival hosted by Dru Bru in Cle Elum!

Every participant can count on support from start to finish with rest stops, and route monitors. Upon completing your ride, you will be welcomed back by a cheering crowd and finish line festivities that include live entertainment, a delicious lunch, and more. Get REGISTERED today.

Interested in sponsoring the ride, see our sponsorship packet.

Walk to Defeat ALS

Walk dates 2024

Mark your calendars for a Walk to Defeat ALS near you. We are busy finalizing exact locations, websites, and more. In the meantime follow our Walk Facebook page or Facebook page to get the latest information.

If you're interested in collaborating with us in 2024, review our sponsorship packet and reach out to jen.campbell@als.org. Together we will celebrate, honor, and remember our loved ones with ALS.

Partners

Support the Evergreen Chapter when you shop at Fred Meyer

Fred Meyer

The ALS Association Evergreen Chapter is a registered non-profit recipient of the Fred Meyer Community Rewards program. If you are already a Fred Meyer Community Rewards member, you can link your Fred Meyer Rewards Card to ALSA Evergreen Chapter. Go to www.fredmeyer.com/account/communityrewards/enroll and create an account or sign in.  If you aren’t yet a rewards member, click on "Create an account."  Once you’re logged in, you are able to designate the chapter to benefit from your shopping by entering our Fred Meyer nonprofit number which is XH798. Every time you shop and use your Rewards Card, you are helping the chapter earn a donation. This doesn't cost you a dime and the chapter receives quarterly donations. Thank you to both YOU and Fred Meyer! 

Contributors Wanted:  If you have an ALS-related story, advocacy experience, living with ALS tips to share, or other ideas to include in our monthly e-newsletter, please email Elizabeth.loomis@als.org. We’d love to hear from you!

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