pALS News
October 2, 2019
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Hello Walkers!
On October 5th, we will come together in support of everyone who has been impacted by ALS, raise critical funds to provide a lifeline to families living with ALS across 24 Northern California counties, and walk towards a world without ALS.
Thank you for joining the movement. We couldn’t do it without YOU!
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Day of Walk Schedule
at Raley Field
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The After Party at Drake's :The Barn!
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9:00am | Gates Open/Check-In
10:00am | Walk Program
11:00am | Official Ribbon Cutting Ceremony
• Be sure to check out our vendor booths, complimentary breakfast (provided by La Bou), and the Unlock ALS table!
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Live music by Wasted Space
VIP Top Ten Team Tents
Beer and food available for purchase
Dog friendly
Yard games, picnic and lawn seating, fire pits, and a great time with the whole family!
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F. A.Q.'s
Are dogs allowed at Raley Field?
Only service animals are allowed inside Raley Field.
Where do I park?
There is plenty of free parking at Raley Field in their parking lot, the entrance is right off 5th st. just south of the stadium.
Do you take donations at the walk?
Yes! We will take cash, cards, or checks (made out to the ALS Association Greater Sacramento Chapter) at the check-in tables.
What do we do when we arrive?
Please be sure to check-in (if you already registered online), drop off any donations you may have with you, pick up your 2019 commemorative Walk T-shirt , visit the Unlock ALS booth & stop by our vendor booths along the concourse! We will also have complimentary coffee, fruit, and pastries inside “Sactown Smokehouse” for all to enjoy.
What if I haven't registered?
No problem! We will have a registration table right next to the check-in table for folks to sign up as individual walkers or with a team.
How do we get a 2019 commemorative T-shirt?
All participants who raise/donate $75 or more are eligible for the 2019 Walk T-shirt! Be sure to grab your voucher from the check-in table and pick yours up at the T-shirt Table (right next to registration).
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The Care Services staff provides free comprehensive programs and services to families living with ALS.
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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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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Check out some of the items we have available in the loan closet!
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Alternative Access Switches
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For information on the above items please reach out to Norriell Richards at nrichards@alssac.org or call (916) 979-9265 ext 3
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Upcoming Support Group Meetings
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Placer Support Group--
Thursday, October 3
11:30am- 12:30pm
at Roseville Executive Suites
1100 Melody Lane Roseville, CA 95678
This monthly group is open to anyone whose life has been touched by ALS.
Stockton Support Group--
*Wednesday, October 9
from 2:30pm-3:30pm at Kaiser Permanente
7373 West Lane, Stockton CA 95210
(Main Office Bldg- 1st floor- Room A)
This group will be meeting quarterly.
Please RSVP with Norriell Richards at nrichards@alssac.org or call 916-979-9265 ext 3.
Tahoe Support Group Meeting
--
Thursday, October 17
12:00pm-2:00pm at Hotel Azure
( In Lakeview Room)
3300 Lake Tahoe Blvd., South Lake Tahoe, CA 96510
Complimentary
Lunch will be provided.
Sacramento Support Group Meeting--
Saturday, October 19
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 . Please join us for conversation, sharing, support, suggestions and tips. Complimentary refreshments will be provided.
Transitions Group Meeting --
Tuesday, October 22
5:30pm-7:00pm at The Greater Sacramento Chapter Office
5701 Sunrise Blvd., Citrus Heights, CA 95610
This is a group for anyone experiencing loss.
Chico Support Group
—Thursday,October 31
12:00pm-2:00pm at Enloe Home care
1390 E. Lassen Ave., Chico, CA 95973
(Please ask the receptionist at the lobby desk for directions to the correct room). This monthly drop-in group is open to anyone whose life has been touched by ALS. Complimentary Lunch will be provided.
*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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Upcoming ALS Multidisciplinary Clinics
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UC Davis ALS Multidisciplinary Clinic-- Friday, October 4
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
Forbes Norris ALS Multidisciplinary Clinic --Thursday, October 17
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.
Kaiser ALS Multidisciplinary Clinic--Weds., October 23
The location of the clinic is
2025 Morse Avenue, Sacramento, CA 95825.
For questions, please contact
nrichards@alssac.org
.
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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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The Neuropathology of ALS: What can we learn?
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ALS Clinical Trial Pipeline Series- Winter 2019
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Dr. Jeremy Shefner will review the ALS clinical trial pipeline and answer questions about the current state of clinical research.
S
peaker:
Jeremy Shefner, M.D., Ph.D., FAAN, Barrow Neurological Institute
Thursday, December 12, 2019
2:00 p.m. EDT
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BrainGate2:
Inclusion/Exclusion Criteria
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The REFALS Trial
Information
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Please visit our ALS Research Portal, and Clinical Trial Information on The ALS Greater Sacramento Webpage.
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Intimacy and Sexuality for People and Partners with ALS
Speaker:
Kyla Laraway, MS, OTD, OTR/L
Monday, October 21, 2019
2:00 p.m. EDT
Intimacy and sexuality are important aspects of a person's well-being. Kyla Laraway, MS, OTD, OTR/L will share information, tips, and techniques related to communication, energy conservation, and new situations that support maintaining intimacy, comfort, and security for people diagnosed with ALS and their partners.
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Join us on Saturday, October 26, 2019
Lunch & Learns are focused on improving the quality of life for caregivers navigating ALS.
In our first session author of " The Art & Science of Caregiving' Annelise Schinzinger will help you establish foundational tools to bring ease, joy and comfort to your pALS, while honoring self-care.
We will also have Miriam Tutman RN, BSN, CCM, and founder of LifeCare Management who will lay the foundation for the essentials in setting up care in the home, and how to find and hire independent caregivers, and how this can save you money, greatly improve the quality of care, and how to do it legally.
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Miriam learned about ALS through her father, who had ALS. She comes to us understanding the disease and understanding caregivers needs. Miriam is very passionate about helping people with ALS, as well as educating the general public about hiring Caregivers using a new model. Miriam is the founder of her business, LifeCare Management where she focuses on adult and elder care management and caregiver referrals. Her extensive background includes being a Registered Nurse for 30 years and a dedicated Certified Care Manager. She has also served as a Public Health Nurse and she is an active member of The Aging Life Care Association (ALCA), where she is an advocate for families caring for older relatives, or disabled adults, ensuring that they live well as they face the challenges of aging.
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Options For Communicating Your Medical Needs
In The Event Of An Emergency
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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.
Contact the chapter office to ask for a wristband today! (916)979-9265 or email nwakefield@alssac.org
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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 edical Information” or “The ALS Association”.
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Living with ALS not only impacts a person’s daily living, 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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Caregiver Support- Create a Caregiving Community:
New Mobile App
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. The program has expanded to include a new mobile app that can be downloaded to your smartphone or tablet. So, it’s very easy for people to organize a care community for their own family or for loved ones impacted by ALS.
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Through ALS Care Connection (powered by Lotsa Helping Hands), families can set up a private online calendar that can be used to organize volunteers who want to take on some of the tasks that have become less manageable.
Now, when someone asks what they can do to help, the answer is, “Let me give you access to our ALS Care Connection calendar.” To learn more about accessing ALS Care Connection and creating a private community for your family,
click here.
The ALS Care Connection mobile app can be found in both the Apple App Store and the Google Play Store by searching for “Lotsa Helping Hands.” Once your family’s private community has been set up, The ALS Association logo will appear at the top.
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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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Sign Up for the
ALS
Registry
!
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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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