ALS Ice Bucket Challenge Progress

 
The ALS Association

  Monthly e-Newsletter of The ALS Association Greater Sacramento Chapter

 

August 2022

 
 

Greater Sacramento News & Upcoming Events


Greater Sacramento Highlights
Proudly Serving 24 Northern California Counties

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Walk to Defeat ALS - Saturday, September 17 at 9 a.m.
Elk Grove Regional Park

Just a few weeks away, we will be holding our annual Walk to Defeat ALS on September 17! Join us now as an Individual Walker, Team Captain or Volunteer as we do whatever it takes to find a cure for ALS! 

We have over 50 teams already registered and would love to see you too! Funds raised will provide local families living with ALS no-cost services like durable medical equipment, multidisciplinary clinics, transportation to medical appointments, and home visits with specialists. Help us reach our goal of $350,000!

Are you walking in honor or memory of someone? Please fill out this form or email jennifer.tomarelli@als.org so we can celebrate your special someone on Walk day!

Contact Stephanie Cardenas at 916-877-8302 for more information. 

 


Greater Sacramento eNewsletter Highlights:


1. Walk to Defeat ALS
2. CEO Soak raises close to $20,000!
3. Virtual Support Group Meetings



 

FDA Approves ALS Treatment AMX0035

The FDA has approved AMX0035, a new treatment that has been shown to slow progression of ALS and extend life. This is an amazing development in the fight against ALS, and a meaningful win for the entire ALS community who worked tirelessly to make this happen. We still have a lot of work to do to cure ALS, but this new treatment is a significant step in that fight.

 

ICER Issues Flawed Final Report

We strongly disagree with ICER’s final report on new ALS drugs, which may result in people living with ALS being unable to access life-extending treatments. ICER’s flawed conclusions were based on their discriminatory methodology.

 

Public Comments Filed in Push for Medicare Coverage of Seat Elevation

The ALS Association filed comments with the Centers for Medicare and Medicaid Services (CMS), urging the agency to provide Medicare coverage for seat elevation systems in power wheelchairs since these systems are a medical necessity for people living with ALS.

 

Meet Ashley Wong, One of This Year’s Recipients of The Jane Calmes ALS Scholarship Fund

We recently talked with Ashley Wong, one of the 2022 scholarship recipients, to learn more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in healthcare.

Meet Liam Rudin, One of This Year’s Recipients of The Jane Calmes ALS Scholarship Fund

We recently talked with Liam Rudin, one of the 2022 The Jane Calmes ALS Scholarship recipients, to learn more about his connection to ALS, what receiving the scholarship means to him, and his future plans studying accounting.

To help support students like Ashley and Liam, and other families impacted by ALS, please consider making a gift here.

 

Adapting and Adjusting—Strategies for Combating Malnutrition for People with ALS

As ALS progresses, the challenges of maintaining good nutrition as well as avoiding malnutrition change. With the support of caregivers and a multidisciplinary care team, these challenges can be managed to provide both the best nutrition and best quality of life at all stages.

 

The Three of Us, Telling Stories Through Music

Most songwriters will tell you, the key to a really good song is the lyrics, a story being told with unique chords and melodies, evoking a specific emotion and compelling listeners to connect and share. No one knows this better than the Swope family, sharing their beautiful memories and storytelling through music, rhythm and song.

 

Jackie Cox: Why She Fights for the ALS Community

Jackie could have been the The ALS Association Greater Philadelphia Chapter's volunteer of the month years before her mother's ALS diagnosis. Ironically, in 2013, her dedication to the ALS mission took on an entirely new meaning for her.

How Far Would You Dare Go to End ALS?

Matt Miller might just be the most shameless member of ‘Team Finlay,’ having spent the last 10 years taking outlandish dares from family and friends to raise money for his cousin Jack. From sleeping on roofs to participating in water aerobics dressed like Jane Fonda, there is nothing Matt won’t do to help fight ALS.

 

T-Shirt Design Contest Winner

Thank you to everyone who participated in our nationwide t-shirt design contest! The winning design, created by Jennifer Bianco, will be featured on the 2023 Walk to Defeat ALS t-shirts.

 

Podcast Episodes

Advancing ALS Research
Recorded on September 29, 2022

Your host Jeremy welcomes Dr. Devesh Pant to the show to talk about new developments in ALS research.

Preventing Harms Through Home Modifications
Recorded on September 22, 2022

Jeremy talks to Alisa Brownlee, an Assistive Technology Specialist who helps people with ALS adapt their homes to make them safe and livable.

ALS Advocates Move AMX0035 Closer to Approval
Recorded on September 15, 2022

Jeremy looks back on the role people living with ALS and leading ALS clinicians played in convincing an FDA advisory committee’s vote to support the approval of AMX0035 to treat ALS.

 

Learning Opportunities

Eligibility and Enrollment into Medicare, Medicaid, and Other Insurance.
Monday, October 17, 2022 at 2:00 p.m. ET

RELYVRIO (AMX0035) Community Webinar
Tuesday October 11, 2022 at 3:00 p.m. ET
and Tuesday October 18, 2022 at 6:00 p.m. ET

 
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The ALS Association Greater Sacramento Chapter
5701 Sunrise Blvd.
Citrus Heights, CA 95610
(916) 979-9265

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