pALS News
November 7, 2019
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Help Protect the Right to Breathe
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Despite our advocacy and the assistance of Congress, the Centers for Medicare and Medicaid Services (CMS) recently moved forward with a plan to include noninvasive ventilators in the next round of the competitive bidding program. To prevent this from happening, Representatives Morgan Griffith (R-VA) and Peter Welch (D-VT) introduced the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act, which would remove noninvasive ventilators from competitive bidding and require Medicare to update outdated coverage policies governing the use of noninvasive ventilators.Send a letter today to urge your members of Congress to cosponsor the SMART Act to safeguard access to critical respiratory care!
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The Care Services staff provides free comprehensive programs and services to families living with ALS.
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Multidisciplinary Clinics
Support Groups for Patients and Caregivers
Augmentative Speech Communication Device Program
Get Smart Program
In-Home Evaluations
PALS 4 life Grant Programs
ALS Referrals and Resource Center
Durable Medical Equipment Loan Program.
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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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We all need support during certain stages of our lives in order to cope with difficult situations. For people with ALS and their families, a diagnosis of ALS is a devastatingly stressful life event. A support group provides a helpful setting in which you, your family and your caregiver can obtain and digest reliable information, find a supportive network of people in similar circumstances, and a context in which to share your experience, fears, concerns, and hopes. A support group can provide a reminder that you are not alone, and there is hope for a good quality of life.
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Sacramento Support Group
Saturday, November 16
from 10:30am-12:30pm at UC Davis Medical Center
Lawrence J. Ellison Ambulatory Care Center
3rd Floor - Room 3015 A and 3015 B
(free parking available in the adjacent parking structure).
This monthly drop-in group is open to anyone whose life has been touched someone living with.
Transitions Group Meeting -- Tuesday, November 19
5:30pm-7:00pm
*500 N Street, Sacramento, CA 95814
Community Room
Door code #1227
This is a group for anyone experiencing loss.
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Upcoming ALS Multidisciplinary Clinics
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UC Davis ALS Multidisciplinary Clinic-- Friday, November 15
The location of the multidisciplinary clinic is
4860 Y Street, Ste.0100, Sacramento 95817. There is parking for $2 (with validation) in the adjoining parking structure. If you have any questions about your appointment, please email
nwakfield@alssac.org
Kaiser ALS Multidisciplinary Clinic--Weds., November 20
The location of the clinic is
2025 Morse Avenue, Sacramento, CA 95825.
For questions, please contact
nrichards@alssac.org
Forbes Norris ALS Multidisciplinary Clinic
Thursday, November 21
Please note, the location of the Forbes Norris clinic is
1315 Alhambra Boulevard, Suite 210, Sacramento. There is validated parking in the attached parking structure, but you may want to drop off pALS in wheelchairs at the front of the building, as wheelchair accessibility is only available at the front entrance.
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Multidisciplinary clinics utilize a team of health care professionals who focus their care on ALS. Typically, patients are seen by a neurologist; respiratory, occupational, physical, and speech therapists; registered dietitians, durable medical equipment specialists, and a member of the ALS Association team … all in one appointment. Patients benefit from a coordinated team approach to their care. If you are not currently participating in a multidisciplinary clinic and would like to, give our office a call at (916) 979-9265 or email at
nwakefield@alssac.org
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Research & Clinical Trials
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The Neuropathy of ALS: What Can We Learn?
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Speaker
Jonathan Glass, M.D., Emory University
Wednesday, November 13, 2019
10:00 a.m.
Research experiments in ALS and other neurodegenerative diseases are highly dependent on the study of human nervous system tissues. Brain, spinal cord and other tissues are used for diagnosis as well as for discovery of disease mechanisms that can lead to disease modeling and therapy development. In this webinar, Dr. Glass will discuss the basics of neuropathology as it relates to ALS, including demonstrations of pathological features that have led to major investigations focused on understanding the underpinnings of ALS and the search for a cure
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REFINE-ALS: A Much Needed Biomarker Study of Edaravone
(Radicava) in ALS
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Thursday, November 14, 2019
1:00 p.m.
We will review edaravone evidence, talk about the use of biomarkers to understand the effect of medical therapies, present the design of the REFINE-ALS study, and discuss how people can get involved in the study.
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Please visit our ALS Research Portal, and Clinical Trial Information on The ALS Greater Sacramento Webpage.
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What You Need to Know About Quitting Your Job to Provide Care: Developing a Plan to Maximize Independence in Providing and Receiving Care
Speaker
Rebekah Keizer MA, BCC
Monday, November 18, 2019
11:00 a.m.
Leaving the workforce can have unexpected emotional, financial, medical, and social repercussions that should be thought through carefully. Guest speaker, Rebekah Keizer MA, BCC, shares what you need to know before making this choice and provides a detailed look at the many resources that can be utilized to help maximize independence for those providing and receiving care.
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How to Gain Access to VOCSN and Overview of Reimbursement Process
Speaker
Chris Brooks, Managing Partner, Ventec Life Systems
Wednesday, November 20, 2019
10:00 a.m.
Five therapies. One Device. VOCSN integrates five separate medical devices, including a ventilator, oxygen concentrator, cough assist, suction, and nebulizer, into one multi-function ventilator. Learn how to gain access to VOCSN and the reimbursement process.
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I Just Took a DNA test- Turns Out I Don't Have ALL the Answers
Speaker
Jennifer Roggenbuck, MS, CGC, The Ohio State University Medical Center
Friday, November 22, 2019
10:00 a.m.
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Are you one of the many people living with ALS who had genetic testing this year? Grab your genetic test report and sit down with Jennifer Roggenbuck, MS, CGC, Genetic Counselor at The Ohio State University Medical Center, to discuss what it all means. Common test outcomes, implications for family members, and next steps will be discussed
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Click Here
to view a list of archived webinar recordings from the ALS Association Greater Sacramento Chapter .
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2008 Dodge Grand Caravan SE with a 12/2009
BraunAbility Entervan Conversion
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Price: $15,000 OBO
V6 Automatic
Mileage: 76,500
Ramp width: 29.5”
Door height: 52.5”
Interior height: 57”
Side Entry; Bi-Fold Power Ramp; Kneeling option
Set of 4 Q’Straint Wheelchair Retractor Straps plus extra set of 4 Q’Straint straps
Power Driver’s seat; Removable Front Passenger seat; Back Bench seat for 3
Please contact Therese Stansbury at
(530) 518-0781
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Options For Communicating Your Medical Needs
In The Event Of An Emergency
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Living with ALS not only impacts a person’s daily life, but also what to do in an emergency situation or hospital stay. When providing care, health professionals and emergency personnel, like paramedics, will have many questions about a person’s medical condition. In these stressful situations, it is often helpful to have an organized set of information, which can help inform medical providers about specific issues and considerations. To request one from the chapter call (916) 979-9265.
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ALS Medical Alert Wristbands:
It’s important for emergency medical personnel to know that you have ALS, but sometimes this information doesn’t get communicated, or, more often, medical professionals may not be familiar with ALS and may not be aware of information important to your care. The Greater Sacramento ALS Chapter has created wrist bands that direct them to a website where they can get important information about caring for an ALS patient.
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Key Medical Information Mobile App:
The Key Medical Information app provides medical personnel with critical information to care for a person with ALS (amyotrophic lateral sclerosis) during an emergency. In addition to medical dos and don’ts, the app provides a communication board and emergency contact fields for users to reference. The app is available in Google Play and the Apple Store and is searchable by “Key medical Information” or “The ALS Association”.
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Care Connection: A Way to Help Your Family
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The impact of an ALS diagnosis is profound – and not just for the person living with the disease. Daily activities, like making meals, doing laundry, mowing the lawn, and walking the dog, take a back seat when providing care for a family member with ALS. Caregivers can feel defeated by the growing list of tasks they are no longer able to manage. Yet, it can be hard to know when and how to ask family members, friends, and neighbors for help. In the same vein, it can be difficult for those who want to lend a helping hand to know just what is needed and how to make a difference. Our ALS Care Connection program was created to help.
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ALS advocates lead the fight to defeat ALS on the frontlines. You can lead us closer to a world without ALS by joining the dedicated network of ALS advocates nation-wide. As an ALS advocate, you can help change the laws and policies that affect thousands of people living with ALS and their families. Sign-up to be an ALS Association Advocate and you will receive important updates and action alerts on the latest advocacy issues. Help us continue to light the way for a treatment and cure for ALS.
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T
he National ALS Registry was created and is designed to identify ALS cases from throughout the entire United States. The registry is collecting crucial information about the disease that will improve care for people with ALS and help us learn what causes the disease and how it can be treated and prevented.
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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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Thank You to our Chapter Sponsors!
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We look forward to seeing you at a Support Group Meeting or one of our events. Please reach out if you have any questions, or concerns.
Warmly,
Care Services Team
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