ALS Community News
June 30, 2021
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A bi-weekly communication designed specifically for pALS & cALS living with ALS |
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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 Telemedicine
Virtual Support Groups
Care Consultations
Home 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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Invacare 440 Electric Patient Lift |
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Upcoming Virtual Support Group Meetings |
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Making Connections Group
(For Persons with ALS, Family, Friends, and Caregivers)
Tuesday, July 13, 2021
1:00 pm
Meeting ID: 843 0018 4853
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Tahoe Support Group
(For Persons with ALS, Family, Friends and Caregivers)
Thurs, July 15, 2021
12:00pm
Meeting ID: 830 4561 7162
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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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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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Research & Clinical Trials |
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Frequent Strenuous Exercise Increases the Risk of Developing ALS in Certain People
Frequent strenuous exercise increases the risk of developing motor neuron disease (MND)/ALS in certain people, new research from the University of Sheffield has found.
The findings, published in the journal EBioMedicine, show a causal relationship between exercise and MND, with high intensity physical activity likely to contribute to motor neurone injury, but only in individuals with a predisposing genetic profile.
Scientists at the University of Sheffield believe the pioneering study represents a significant step towards unravelling the link between high levels of physical activity and the development of the neurodegenerative condition which affects approximately 5,000 people in the UK.
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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 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.
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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.
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.
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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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Wednesday, July 7, 2021 1:00 PM - 2:00 PM EDT
BRAIN-COMPUTER INTERFACES FOR COMMUNICATION IMPAIRMENTS
Dr. Nathan Crone (Johns Hopkins University) discusses the rationale for using brain-computer interfaces to support communication in people with severe motor impairments and describes two clinical trials of implantable brain-computer interfaces at Johns Hopkins.
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Tuesday, July 13, 2021 1:00 PM - 2:00 PM EDT
MOVING RESEARCH FORWARD USING ANSWER ALS RESOURCES
Join Dr. Steven Zeiler, Dr. Terri Thompson and Ed Rapp on July 13th to hear more about the newly launched ALS Companion app and the Answer ALS data portal. Answer ALS is creating a hub of ALS knowledge and resources to help propel the research field forward. Find out how you can help.
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13 minutes
Jessica and Jeremy are joined by Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, to discuss Global ALS/MND Awareness Day and the work that is being done all over the world in the fight against ALS.
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Tell Congress: Cosponsor the Promising Pathway Act:
People living with ALS urgently need effective new treatments. The Promising Pathway Act would create a new provisional approval pathway that will accelerate access and provide the FDA with greater flexibility to approve promising new treatments for diseases like ALS. This pathway would be similar to those currently in place in other countries that allow access to investigational drugs while requiring additional research prior to final approval.
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Tell Congress: Support the ACT for ALS Act:
Representatives Jeff Fortenberry (R-Neb.) and Mike Quigley (D-Ill.) and Senators Chris Coons (D-Del.) and Lisa Murkowski (R-Alaska) recently reintroduced the Accelerating Access to Critical Therapies (ACT) for ALS Act. This bill creates a new framework that will provide expanded access to experimental drugs for people living with ALS now and accelerate the development of new therapies and our search for a cure.
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Ask Your Members of Congress to Join the ALS Caucus:
The House and Senate ALS Caucuses provide a vital voice for people with ALS, their loved ones and the entire ALS community in Congress. Through the caucuses, members of Congress come together from both sides of the aisle to raise awareness about the challenges faced by people with ALS and their families in Congress, advance policies that improve the lives of people with ALS, expand the network of support for those living with ALS, and advocate for investments in research to discover treatments and a cure.
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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.
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Resources in our Communities |
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An independent, private, non-profit program funded by the Department of Health Care Services, Area 4 Agency on Aging, grants and private contributions. Del Oro offers a host of free services to unpaid family caregivers in Northern California’s Gold Country counties -- Alpine, Amador, Calaveras, Colusa, El Dorado, Nevada, Placer, Sacramento, San Joaquin, Sierra, Sutter, Yolo and Yuba.
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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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