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The ALS Association

  Monthly e-Newsletter of The ALS Association Greater Sacramento Chapter


December 2022


Greater Sacramento News & Upcoming Events

Greater Sacramento Highlights
Proudly Serving 24 Northern California Counties

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ALS Advocate Stories

This month we feature a heartfelt story by California State Assemblyman Rick Chavez Zbur (CA-51), whose personal connection to ALS led him to become a public servant. In the Assembly, he is a strong supporter for patient care and a proud Member of the California Rare Disease Legislative Caucus. 

In Memory of my Sister, Jackie by Assemblymember Rick Chavez Zbur (D-West Hollywood/Santa Monica) Family and friends always described my sister Jackie as warm and caring, energetic and fun loving, with a zest for life and a thirst for experiencing the wonders of our world. That’s why watching her suffer with and eventually die from ALS was so incredibly painful. Jacqueline Marie Zbur died two days before what would have been her 60th birthday in 2020. She was my very best friend and the first person I came out to as a gay man, almost a year before I came out to anyone else, because she was the person I trusted most and felt safe with. While all my siblings are especially close, and I love my brother John and my sister JoAnn more than I can ever say, we all realized after her passing that each of us considered her to be our very best friend. She was that special. Read more.



Greater Sacramento eNewsletter Highlights:

1. Thank You Volunteers
2. Advocacy Update
3. Upcoming Events
4. The Value of Planning for Caregivers
6. Upcoming Virtual Support Group Meetings
Click here to read more.


My ALS Journey

Introducing My ALS Journey™, an interactive, web-based tool that allows people with ALS to take control of their journey. Users can browse articles, view videos and find other helpful information specific to any stage of their disease.


Lou Gehrig Day

Each June 2, Major League Baseball celebrates Lou Gehrig in ballparks across the country. This day is designed to raise awareness and funds for ALS, also known as Lou Gehrig's disease, and to honor the legacy of Lou Gehrig, one of baseball's greatest players. Find out more about what is happening in your area and how you can join in to support the ALS community.


ALS Advocates: Making Their Voices Heard Across the Nation

It is always gratifying when hard work pays off, and for the ALS community, there have been many policy wins to celebrate recently. These successes are the direct result of the efforts of more than 40,000 ALS advocates across the country, working tirelessly with The ALS Association to make an impact for people living with the disease.


Important Update on Insurance Denials by Cigna and Others of Drugs Approved to Treat ALS

We continue to press Cigna to reverse course and make Relyvrio treatment available for people living with ALS on Cigna plans. While Cigna initially revised its policy, those changes were insufficient to ensure timely access to Relyvrio for people living with ALS.


Celebrating the Successes of ALS Research Today, While Working to Fund More for the Future

This last year has seen incredible progress in the fight to create a world without ALS. The FDA approval of Relyvrio (AMX0035) in 2022 and Qalsody (tofersen) last month are significant steps in the effort to make ALS a livable disease. As we celebrate the success of these long-term investments, we continue to fund the next generation of possible treatments.

ALS Association and Association for Frontotemporal Degeneration Partner to Advance Digital Tool Development

The ALS Association and The Association for Frontotemporal Degeneration (AFTD) are launching a research funding opportunity to support collaborative development of digital assessment tools for both ALS and frontotemporal degeneration (FTD).


Quality Local Care Critical for the ALS Community

For people with ALS, multidisciplinary care has been shown to extend survival and improve life quality. We are committed to expanding this network insuring people with ALS, regardless of where they live, have access to this type of critical care.


Jessy Ybarra: Living His Best Life with ALS

Jessy Ybarra’s journey with ALS began in 2015, at the age of 51. Like most he struggled with this diagnosis at first. Then he realized that while he couldn't control his ALS, he could take control of his LIFE with ALS, so he created what he calls his ‘aliveness list'—a future he could live INTO.

Gayle Jacobs: Living Her Best Life with ALS

Gayle Jacobs’ journey with ALS started in 2017 when she was diagnosed at the age of 44. An optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her with her family and friends, and she quickly set her sights on how she wanted to live her life with ALS.


Podcast Episodes

My ALS Journey
Recorded on May 25, 2023

Your host Jeremy talks to Leslie Ryan, Senior Director of Education and Professional Competencies at The ALS Association about the new My ALS Journey tool, a web-based platform that provides personalized guidance and support to people living with ALS.

Testing Whether a Brain Computer Interface Can Help Restore Speech
Recorded on May 18, 2023

Jeremy is joined by the co-directors of the UC Davis Neuroprosthetics Lab, Dr. Sergey Stavisky and Dr. David Brandman, to learn more about their research testing the feasibility of intracortical Brain Computer Interface technology to restore speech.

Honoring the Life and Legacy of Lindy Krohn Lund
Recorded on May 11, 2023

Jeremy is joined by Laura Kildow, Karin Kildow, and hall of fame Olympic skier Lindsey Vonn to talk about their mother, Lindy Krohn Lund, who lost her one year battle with ALS in August 2022.


Learning Opportunities

Understanding Statistical and Clinical Significance
Thursday, June 15, 2023 at 4:00 p.m. ET

Transportation & Travel Tips for People Living With ALS
Friday, June 26, 2023, 2:00 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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