ALS Community News
March 25, 2021
A bi-weekly communication designed specifically for pALS & cALS living with ALS
Save the Date
Registration for The Walk To Defeat ALS is now open! We have already welcomed many amazing returning teams as well as a few new ones! Whether you're a first-time Walker or have participated for years, joining the Walk brings us one step closer to a world without ALS. Register at web.alsa.org/sacwalk or contact your Walk Coach Kristen Montgomery at kmontgomery@alssac.org or 916-367-3097!
Programs & Services
As a continued effort to keep our community safe, we have adapted our programs and services to meet the unique need of the ALS, and their families during COVID-19 crisis.
Emergency Relief Grants
Access to Telemedicine
Virtual Support Groups
Virtual Care Consultations
Virtual Home Evaluations
Expanded Staff Hours
ALS Referrals and Information
DME Equipment Loans & Curbside Pick-Ups.
Get Smart Program
PALS 4 Life Grant Program
Durable Medical Equipment Loan Closet
The ALS Association Greater Sacramento Chapter's durable medical
equipment loan program is a coordinated effort to provide needed equipment and augmentative devices to people with ALS. The loan closet is designed to provide DME that insurance does not cover or while permanent equipment is on order from the insurance company or alternate funding source.
We are happy to provide curbside pickups or personal doorstep deliveries for anyone needing DME equipment and supplies. Please reach out to your Care Services Team at (916) 979-9265 to make requests for needed DME items.


*We have an electric car carrier for a wheelchair or scooter. Please call for details.
Upcoming Virtual Support Group Meetings




Tahoe Support Group Meeting
(For all PALS, Family, Friends, and Caregivers)
Thursday, March 25, 2021
12:00 pm
Meeting ID: 882 3234 7061
Please reach out to our Care Services Team for any additional questions regarding Support Groups. We are happy to help you test out zoom or answer any questions you may have.
(916) 979-9265
ALS Multidisciplinary Clinics
The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on best practices.
This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison.
Click the button below to see the most recent changes and information regarding ALS Multidisciplinary Clinics in the Sacramento Region. 
Resources
As a service to the ALS community, we provide various resources, including publications and videos produced by The Association, other related booksProducts/Services to Aid in Daily Living, as well as Informative Links to give visitors the ability to quickly and easily access information pertaining to a variety of subjects and sign up for The Chapter Newsletter. Please browse the menu for all available resources.
Research & Clinical Trials
Reasons for Hope in ALS Research with the Discovery of NU-9

In a study funded in part by The ALS Association’s TREAT ALS program, researchers from Northwestern University have identified the first compound (NU-9) that eliminates the ongoing degeneration of diseased upper motor neurons, a key contributor to ALS. While this news is exciting, this study has only tested the compound in mice and in laboratory neurons and is in the very early stages. Researchers must now determine if this particular compound can be further developed for humans and would need to do additional chemistry to optimize the compound. In addition, assessments are needed to determine whether this compound can get into the brain and spinal cord at appreciable levels, engage with its target and if it is safe and tolerable. Although still early in its development, we are encouraged by the addition of another therapeutic intervention in the ALS drug discovery pipeline and are happy that our funding was able to seed this line of research work. 
 
In a recent Connecting ALS podcast, Dr. Kuldip Dave, vice president of research for The ALS Association, talked about these new findings and the hope they bring to the ALS community and global research collaboration.

To listen to the entire interview
Clinical Trials for ALS Patients

The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide the most accurate and up-to-date resource for information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases. 

You can locate both interventional trials, which examine if an experimental treatment is effective and safe under controlled environments, and observational trials, which examine people in more natural environments to collect information about their disease without giving an intervention.
ALS Focus
ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit. All data collected is de-identified and shared free of charge with the entire ALS community.

Join Us – Your Participation Makes An Impact
Participate in research outside of clinical trials. You are eligible at any stage of the disease. You live with the challenges of ALS every day. Share your opinions and insights on your disease journey to inform change.
Webinars and Podcasts

Chapter Webinar Recording

Stretching and Flexibility Techniques for Individuals with Amyotrophic Lateral Sclerosis (ALS)

If you missed this month's live one-hour course addressing common musculoskeletal issues that can arise due to ALS, and strategies to help minimize joint discomfort while improving overall flexibility, don't worry- we recorded the first of this series for you! 

Don't miss the upcoming April 15th live webinar, when Irina will continue to educate us on exercises to help with range of motion and flexibility. Look for more information coming soon!

*Irina Fedulow is a physical therapist and Board Certified Neurological Clinical Specialist who has treated many individuals with ALS at UCSF, where she has consulted with the ALS and Headache institutes. 

In this podcast, Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter, to serve up some helpful tips on maintaining good nutrition while living with ALS.
Take Action
Tuesday, the President signed into law a “technical fix” to the ALS Disability Insurance Access Act. The technical fix makes the Social Security Disability Insurance (SSDI) waiver retroactive for eligible people with ALS. Prior to this fix, the law applied only to eligible people with ALS who applied on or after December 23, 2020, when the bill became law. 
 
For more information on frequently asked questions about how eligible people with ALS can access SSDI and Medicare benefits, see our updated FAQ here: https://www.als.org/blog/ssdi-and-medicare-faq  
 
Help change laws and policies: BECOME AN ADVOCATE

It is through your advocacy that, together, we will create a world without ALS. The actions of Congress and the federal government have a tremendous impact on people with ALS, so it's important that those leaders hear from you.

Please use this action center to review our issues, learn about your elected officials, and take action in support of the brave individuals living with this disease. 
The National ALS Registry
Every person living with ALS in the United States can enroll in the National ALS Registry! The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. 
Most important, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented. 

Now, more than ever, your online shopping can make a difference!
Every time you shop on Amazon, a portion of your purchase will be donated to the ALS Association, Greater Sacramento Chapter. Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to ALS Association, Greater Sacramento whenever you shop on AmazonSmile. Just choose ALS Association, Greater Sacramento Chapter when prompted to choose a charity through the Amazon Smile program! 
Stay connected with the Greater Sacramento Chapter on all Social Media Platforms like Facebook, Twitter, and Instagram. Daily updates are posted on the Chapter Resource Center, DME loans, Clinics, and Virtual Support Groups.