The ALS Association Evergreen Chapter

Exciting news! 🎉 Tofersen, a newly approved drug for familial ALS (SOD1 gene), was given to the first patient in Washington state in December. Dr. Elliott, Medical Director at the ALS Program at Providence-Swedish Neuroscience Institute, shared the breakthrough, praising the collaboration between the IR team, pharmacy, and ALS Association Certified Center of Excellence at Swedish. This marks a significant advancement in ALS treatment.

Learn more about tofersen and the SOD1 gene.
https://www.als.org/navigating-als/living-with-als/fda-approved-drugs/tofersen

“Living with ALS has its challenges, but life is for living. He’s continued to coach, and we’re excited for all that he has accomplished.” -Steve Fisher, former head basketball coach at San Diego State University.

Diagnosed with in 2011, SDSU’s Assistant Coach, Mark Fisher, has helped lead the Aztecs to 8 consecutive 20-win seasons during his career and became the first known person living with ALS to coach in the .

Read more: https://bit.ly/ALS-Final-Four

What a year it has been! ALS advocates influenced Congress on the national, state, and local level. New care programs have been developed that serve the ALS community, including My ALS Journey. ALS researchers are working tirelessly in the search for new treatments and a cure, and we saw the fruits of their labor with the FDA approval of Tofersen in April. Read more about recent accomplishments for the ALS community in our 2023 year in review.

2023: A Year in Review As 2023 comes to a close, we wanted to share some of the impact we have made this past year, thanks to you and all those who have joined us in the fight to end ALS.

Magnolia Lutheran Church celebrated its 30th annual Swedish Pancake Breakfast in memory of Reverend Douglas F. Langholz, their beloved pastor who battled ALS. Their dedicated efforts yielded an enjoyable morning and a successful fundraising total of $1,885.83. The combined funds raised from their events surpass $22,000, providing direct support to the ALS Association!

A heartfelt thank you to Magnolia Lutheran Church for their unwavering support of the ALS Association! 🙏💙

𝐉𝐚𝐧𝐮𝐚𝐫𝐲 𝐄-𝐍𝐞𝐰𝐬

🎨 Empowering Caregivers: A Look at our Retreat
🔬 Hope Emerges: Tofersen
🔮 Looking to the Future
⛳ Driving Change: Tals Scramble
🥞 Legacy of Love: Magnolia Lutheran Church
🏅 Marathon Opportunities
💙 Support Group Information

🔍Search "Wishing you a Happy New Year! - January E-newsletter" in your inbox if you think you missed it.

January update!

➡️The Southern Idaho support group facilitated by Heidi Frantz is moved to Monday, January 8.

➡️The King County support group facilitated by Megan Braaten will be held on MLK Jr. Day, January 15th.

➡️The Alaska support group facilitated by Brooke Lavender will be held on FRIDAY, January 19th at 3 pm ADT.

🎉 We'll be back in action on January 2. Wishing you a joyful and prosperous New Year!

Dive into 2024 with Kula Cloth's Pyka Plunge at Mukilteo's Lighthouse Park at noon on Jan 1. Take the cold plunge, win prizes, enjoy the silent disco, and more. Join for $35, watch for $40, or donate. Thank you Kula Cloth for supporting the ALS Association.

Pre-register at https://www.eventbrite.com/e/kula-cloth-pyka-plunge-2024-tickets-682726903547

See you there!

Good sleep is vital to overall health. Sleep helps repair the nervous system and promote nerve regeneration. Lack of quality sleep can exacerbate symptoms and the progression of ALS.

https://www.verywellhealth.com/als-and-sleep-6826484

"In the intricate dance with ALS, the unwavering support of my family and friends transforms what could be an insurmountable journey into a conceivable reality. My existence now exists within the confines of complete paralysis, nourished by a feeding tube, my words finding expression through a speech device, and my very breath reliant on a ventilator. In this state, my reliance on others is absolute."

Tenacious and unwavering - read about Chanel's journey:
https://www.als.org/blog/chanel-hobbs-living-als-her-own-words

Embrace the festive spirit! Just a heads up, we'll be taking a holiday break from December 23 to January 1. Wishing you joyful celebrations!

Donate this holiday season. https://bit.ly/PNWdonate

Happy Kwanzaa to all who celebrate! Today marks the first day of Kwanzaa, a time of learning, community and family celebrating African and African American culture. Each day of the week-long celebration emphasizes one principle.

The 7 Principles of Kwanzaa:
1️⃣ Umoja (unity)
2️⃣ Kujichagulia (self-determination)
3️⃣ Ujima (collective work)
4️⃣ Ujamaa (cooperative economics)
5️⃣ Nia (purpose)
6️⃣ Kuumba (creativity)
7️⃣ Imani (faith)

"Even with ALS, our adventures continue. We try not to let it stop us from doing what we enjoy. We continue to get together with friends and family, go out to eat, and crack up at comedy shows." - Wendy Wilson

Read this heart-warming story at https://www.als.org/blog/wendy-and-michael-wilson-living-als-their-own-words

The gift of love, the gift of peace, the gift of happiness—may these be yours this holiday season.

Learn more: https://www.als.org/blog/breaking-down-barriers-trial-capacity-awardees-work-improve-access-als-clinical-trials

We work hard to stay focused on our MISSION: To discover treatments & a cure for ALS, to serve, advocate for & empower people affected by ALS to live their lives to the fullest. Thanks to the generosity of our donors, we are able to continue fulfilling this mission!

Communication is essential. Eye-gaze devices use eye movement to “activate” a letter, word or phrase on a computer screen, which can then be spoken by the computer for communication purposes. We have 36 eye-gaze devices on loan in our four states. These devices total $700,000!

Learn more about eye gaze technology: https://bit.ly/3uZle9p

With your support, we've successfully brought on board two new Care Services Coordinators over the past year. This marks the establishment of direct support in Montana for the first time, along with increased support in the north Puget Sound area. With a current team of eleven, we're better equipped to facilitate support groups, attend clinics, deliver essential equipment, and provide a range of other services to you!

Your efforts to share the impact of ALS make a big difference and
help to change laws and policies that help us get closer to achieving our
mission to make ALS a livable disease for everyone, everywhere until we find a
cure. https://als.quorum.us/register/

Jen comes to the organization with over 30 years of Development and Fundraising experience she has gained from working with large nonprofits such as the American Heart Association and United Cerebral Palsy. She loves working with the community to make the fundraising events robust and an amazing event for families and volunteers. She is thrilled to be overseeing all aspects of the fundraising and development in the Pacific Northwest. She can be reached at [email protected] or 661-520-5947.

🔔 Please reach out to your care coordinator now if you need something before the end of the year. We will be closing on Friday afternoon and returning on January 2.

The National ALS Registry is currently being used to link enrollees with researchers who are conducting new studies and clinical trials. To see a list of approved studies and trials, visit: https://bit.ly/2IGF0NP

In 2023, we've had over 4,000 support group interactions in the four states we serve. To meet your needs, we offer 16 different support groups each month.

Learn more: https://bit.ly/ECSupportGroups

"We need to have more trials with therapies based on great science and make it easier for people to participate. I am grateful to partner with The ALS Association to ensure more people with ALS can access the hope these trials bring. It’s so needed,” says Dr. Cudkowicz, Director of the Sean M. Healey & AMG Center for ALS and Chief of Neurology at Massachusetts General Hospital

https://www.als.org/blog/breaking-down-barriers-als-quest-cure

Jump in for an invigorating plunge into the chilly waters of the Puget Sound!

Prizes, a Kula Silent Disco Dance Party, and the chance to win fantastic items from Outdoor Research, Dryrobe and DryFox Co. The event starts at noon at Mukilteo State Park (609 Front Street, Mukilteo, WA), and Whidbey Coffee will be providing warmth with their generous coffee donation.

Register https://bit.ly/3QSwmfp