February 2021 ALS e-News

February 2021

Everything we do at the Greater Sacramento Chapter is targeted toward fulfilling our vision of a world without ALS. Each year we survey the ALS community to gain valuable insight into the efficacy of our programming.

If you are a pALS or cALS registered with The Greater Sacramento Chapter, please take a moment and complete our 2021 survey. Your feedback is tremendously important to ensure the ongoing needs of our ALS community are met.

Thank you in advance for helping us improve!

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We are pleased to welcome two new faces to our Chapter Resource Center! Megan Pritchard has joined us as the Office Administrator and Kristen Montgomery is taking the lead as the Community Outreach Manager!

Megan moved to El Dorado Hills from Santa Barbara in November along with her dog Eleanor, and brings years of administrative and volunteer experience. Megan is a dedicated runner and enjoys spending her free time exploring her new neighborhood on foot.

Kristen is a Sacramento native, but she spent the majority of her career working for organizations in the Monterey area. Kristen is a natural creative and she loves spending time working on her art, hanging with her dog Beau, and traveling (once upon a time!) She has a passion for building partnerships and forging relationships, and we know she is going to lead the Walk to Defeat ALS to new heights!

We are thrilled to have them on board and look forward to introducing them to our incredible ALS community!

Boost in Funding Needed for ALS Research This Year

Throughout 2020, the ALS community mobilized together to fight for increased funding for ALS research. That work paid off in December when Congress doubled funding for the Department of Defense ALS Research Program to $40 million. This year, The ALS Association will aggressively pursue new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS.

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New Biomarker Initiative Shows Continued Success of Research Program

Research supported by The ALS Association, through a $1.4 million grant, has grown into a $15 million program to identify biomarkers things in the body like heart rate or fluid levels that can be measured in order to diagnose and track progression of a disease. Target ALS announced “The Target ALS Diagnosis Initiative” in December creating the first ever comprehensive research effort to discover this essential measurement tool. Currently there are no biomarkers for ALS, making it a critical, unmet need in the field.

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One Man's Story About Why He Joined the Fight Against ALS

In 2002, shortly after his son Eric was diagnosed with the disease at age 20, Stuart Obermann and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. Over the years, their commitment to ending ALS and supporting those in the ALS community grew exponentially.

The Importance of Hearing From Caregivers About Their Needs

Recorded on February 4, 2021

Your hosts Mike and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, to learn how the voices of ALS caregivers are being elevated to make sure services and programs are tailored to their needs.

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Health Care Advocacy Blueprint for the First 100 Days

Recorded on January 28, 2021

Your hosts Mike and Jeremy are joined by Katie Berge, director of federal affairs at The Leukemia & Lymphoma Society. Katie walks us through the first 100 days of the Biden administration and lays out the healthcare fights ahead.

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Checking in on Access to COVID-19 Vaccines

Recorded on January 21, 2021

Mike and Jeremy are joined by Dr. Richard Bedlack, director of the Duke ALS Clinic, for an update on the COVID-19 pandemic and the latest on access to vaccines.