ALS Community News
August 26, 2021
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A bi-weekly communication designed specifically for pALS & cALS living with ALS |
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Dear pALS:
The safety and well-being of our ALS community is at the forefront of everything we do at the Greater Sacramento Chapter, and this year’s Walk to Defeat ALS is no different. Due to the pandemic we have made several changes to our largest ALS Awareness and fundraising event to ensure that our ALS community can safely come together to connect and celebrate with family and friends, while raising the bar on ALS awareness.
The biggest and most impactful change we made was the move from Sutter Health Park to Elk Grove Regional Park, where we will have 120 acres to walk, explore, and safely social distance! The chapter will also provide guests with face masks, hand-sanitizing stations and safely pre-packaged foods and beverages throughout the day! In addition to the 1-mile walk, we will have music, games for kids of all ages, information, booths, and a section for our VIP fundraisers. Ample free and accessible parking will be available and your furry friends are more than welcome to attend this year!
Gates Open: 9 a.m.
Program Starts: 10 a.m.
Ribbon Cutting: 11 a.m.
After Party + Lunch: 12 p.m.
If you haven’t registered and want to join in on the fun click here!
If you aren’t able to join us, but wish to make a donation in support of local programs and services, click here!
We hope to see you on Sunday, October 10, 2021 at the park for a Sunday Funday themed Walk to Defeat ALS!
Sincerely,
Nancy Wakefield
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Our programs and services are designed to meet the unique needs of pALS, and their families |
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Access to ALS Clinics
Virtual Support Groups
Care Consultations
Home/Video Evaluations
ALS Referrals, Resources and Information
DME Equipment Loans
Communication Equip. Loans
Get Smart Program
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Durable Medical Equipment Loan Closet |
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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.
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Please reach out to your Care Services Team at (916) 979-9265 to make requests for needed DME items.
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Upcoming Virtual Support Group Meetings |
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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
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Making Connections Support Group
(For Family, Friends, and Caregivers)
Tues., Sept. 14, 2021
1:00 pm
Meeting ID: 843 0018 4853
(Passcode will be emailed to you after registering)
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Tahoe Video
Support Group
(For Family, Friends, and Caregivers)
Thurs., Sept. 16, 2021
12:00 pm
Meeting ID: 830 4561 7162
(Passcode will be emailed to you after registering)
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ALS Multidisciplinary Clinics
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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.
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As a service to the ALS community, we provide various resources, including publications and videos produced by The Association, other related books, Products/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.
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Recall Related to Philips Respiratory Equipment
The FDA published a Safety Communication on June 30, 2021, related to Philips CPAP, Bi-Level, and Ventilator devices. Philips recalled certain devices due to potential health risks associated with material used to abate sound and vibration.
Philips equipment users should visit the Medical Device recall notification page of the Philips website to identify specific equipment impacted by this recall and learn what action should be taken.
Patients relying on life-sustaining ventilation or bi-level equipment should NOT discontinue use until they have spoken with their physician to determine the most appropriate treatment options.
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Research & Clinical Trials |
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Researcher Spotlight: Nishal Shah, Ph.D.
This year The ALS Association has pledged to do whatever it takes to make ALS a livable disease, which means longer lives for people living with ALS, greater quality of life for people living with the disease and ultimately the prevention of ALS altogether. Researchers like our 2020 Milton Safenowitz Postdoctoral Fellowship Program recipients are playing an important role in helping to make this happen.
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Clinical Trials for ALS Patients
The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide the most accurate and up-to-date resources 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.
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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.
Recent policy changes during the COVID-19 pandemic have reduced barriers to telehealth access and have promoted the use of telehealth as a way to deliver acute, chronic, primary and specialty care. The ALS Focus telehealth survey measures telehealth needs, access and preferences of people with ALS. Opinions from those who use and do not use telehealth are equally important.
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Fall Prevention for Individuals with ALS
facilitated by Irina Fedulow-Plante, PT, DPT*
The Falls Prevention Workshop for Individuals with ALS is a 4 course webinar series addressing various aspects related to fall risk as well as strategies to help promote independence and safe mobility.
Each of the webinars will range from 1-2 hours that will focus on key topics and include some active discussion. Caregivers and friends are welcome!
A course handbook is available for printing for you to keep and use as a reference.
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Session 1: Introduction, Reflection and General Guidelines
Friday, Sept. 17, 2021
10am-12pm
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Session 2: Use of Assistive Devices
Friday, Sept. 24, 2021
10am-12pm
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*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. |
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Eligibility and Enrollment into Medicare, Medicaid, and Other Insurance
Monday, September 20, 2021
2:00pm EDT
Register
Choosing insurance is a big decision and should be considered carefully based on your unique medical needs. Our guest speaker with Patient Advocate Foundation will share tips on selecting the best plan for you, eligibility and open enrollment periods and how to navigate benefits for best possible results.
After registering, you will receive a confirmation email containing information about joining the webinar.
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"Identifying an Earlier Domino in Cellular Breakdown Connected to ALS…"
22 MINUTES
Jessica and Jeremy are joined by Dr. Jeffrey Rothstein and Dr. Alyssa Coyne to discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.
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Stay Informed on How You Can Help Change Laws and Policies:
Our federal advocacy work focuses on educating and mobilizing all members of Congress and the Administration in a nonpartisan fashion to achieve the mission of The ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
This year, The ALS Association will aggressively advocate for legislative priorities that will:
- Accelerate Development, Approval, and Access to Effective New Treatments
- Increase Federal Funding for ALS Research
- Permanently Extend Access to Telehealth for People Living with ALS
- Provide High-Quality, Affordable, and Accessible Health Care
- Increase Veterans Benefits for People with ALS and their Families
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The National ALS Registry |
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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.
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Resources in our Communities |
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Providing Compassionate, Effective Support
The ALS Medicare Resource Line is designed to provide individualized case management assistance for those diagnosed with Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig’s Disease. The ALS Medicare Resource line provides assistance with navigating eligibility and enrollment in disability benefits and overcoming insurance coverage and financial burdens that impact access to care. For assistance, call 1-844-244-1306 or complete a request for help form.
Reduce Financial Burden
- Find local, regional and national resources for financial support and for practical needs such as housing, utilities, transportation, and food
- Educational and emotional support resources
- Guide patients through eligible workplace protections such as FMLA and ADA
- Give assistance engaging, applying and appealing workplace benefits including short-term and long-term disability
Enroll into Appropriate Programs
- Provide eligibility, enrollment and appeal navigation into Medicare
- Evaluate eligibility and facilitate application to charity care and discount programs
All services are provided at no charge to the patient. All services are provided through phone and/or email communication.
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VAN FOR SALE
- BRAUN modified side load with power door, ramp and kneel function.
- drop floor for more head room.
- Electric power assisted brakes and steering for low strength drivers.
- Power driver seat that swivels to transfer to and from a wheelchair.
- Front passenger seat is on wheels and removeable.
- There is a little damage on the lower trim below the doors as it is fairly low. The tires are in good shape, the brakes are about 50%. Paint looks good, there is one small dent in the drivers door. The license plate does not come with the vehicle.
- 171,900 miles
- Asking $5500.00 OBO
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If interested contact Bob at lockguy@psln.com
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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!
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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.
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