ALS Greater Sacramento Chapter
pALS News
August 7, 2019
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By taking the first step to end ALS, you are shining a light on this devastating disease and amplifying the voices of all those impacted, while helping us fulfill our vision of a world without ALS.
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As the #1 funding source of local programs and services to the ALS community, The Walk to Defeat ALS® means the world to the families who rely on the vital services provided by The ALS Association Greater Sacramento Chapter.
You can help us provide a lifeline to families by joining our movement and participating in the Greater Sacramento Walk to Defeat ALS® on Saturday, October 5
th.
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There are three ways to get involved:
#1.
Sign up to become a Team Captain! If you can’t do it, consider asking a friend or family member to take on the challenge.
Click here and join the movement!
#2.
Make a tax-deductible donation to the cause
here.
#3.
Join us on Walk Day and show the world finding a cure for ALS is important to you!
Event Details:
Join us as we converge on Raley Field Saturday, October 5
th
at 9 am for a fun-filled day for the entire family. All festivities are free to the community, including admission to both venues, a Kid’s Zone, games, whiffle ball, face painting, DJ music, live music, and vendor booths. This year we’re hosting a Walk After Party at the landmark community gathering spot, Drake’s: The Barn in West Sacramento. Food trucks will be on site providing lunch for a nominal cost, and The Barn will be open and pouring Drake’s Brewing Co. local craft beers to all walk participants 21+ years old.
Both venues offer free parking, with ample ADA spots available. Your furry friends are allowed for the walk along the river path, and the Walk After Party as long as they have a leash (Raley Field allows service animals inside the stadium).
For more information, or to get help from a personal coach, please contact Stefanie Daniels at
sdaniels@alssac.org
or 916-979-9265 ex. 2.
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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
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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Upcoming Support Groups Meetings
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*NEW TIME*
Stockton Support Group-- Wednesday, August 14
2:30pm-3:30pm at Kaiser Permanente
7373 West Lane, Stockton CA 95210
(Main Office Bldg- 1st floor- Room A)
This monthly group is open to anyone whose life has been touched by ALS.
Please RSVP with Norriell Richards at nrichards@alssac.org or call 916-979-9265.
Tahoe Support Group Meeting-- Thursday, August 15
12:00pm-2:00pm
at Hotel Azure
3300 Lake Tahoe Blvd., South Lake Tahoe, CA 96510
(In Lakeview Room)
This monthly group is open to anyone whose life has been touched by ALS. Please join us to discuss, learn, and understand what it is like to live with ALS. Lunch will be provided.
Sacramento Support Group Meeting-- Saturday, August 17
10:30-12:30 p.m. at the 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 by ALS. Please join us for conversation, sharing, support, suggestions and tips. Refreshments will be provided.
Transitions Group – Tuesday, August 27
5:30pm-7:00pm, at the ALS Greater Sacramento Chapter office
5701 Sunrise Blvd., Citrus Heights, CA 95610
Whether you have lost a loved one to ALS or are dealing with the many losses associated with ALS, we hope that you will join us.
Please RSVP with Nancy Wakefield at nwakefield@alssac.org or call 916-979-9265.
Chico Support Group—Thursday, August 29
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. 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, August 16
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., August 21
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, August 29
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.
*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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Accelerating Therapy Development and Expanding Access
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An update on targets and treatments in development will be shared. In addition, Dr. Cudkowicz will share information on the Healey ALS Platform Trial – the first adaptive Master Protocol trial initiative in ALS.
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Speaker:
Merit Cudkowicz, M.D., Director, Sean M. Healey and AMG Center for ALS at Mass General & Julianne Dorn Professor of Neurology, Harvard Medical School
Friday, August 9, 2019
12:00 p.m. EDT
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Palliative Care in ALS Clinic
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Given the complexity of issues accompanying an ALS diagnosis, professional organizations increasingly recommend that ALS patients and their families receive specialist palliative care services concurrent with clinic-based neurological multidisciplinary care.
However, no broadly accepted guidelines define the optimal integration of palliative care into existing clinical frameworks.
In fact, most patients with ALS may never interact with a specialist palliative care team at any point over the course of their disease. This webinar introduces palliative care into ALS clinic and provides an understanding of their role and a frame work into their integration in the care of ALS patients.
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Speaker:
Raghav Govindarajan, M.D., University of Missouri
Thursday, September 12, 2019
4:00 p.m. EDT
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BrainGate2:
Inclusion/Exclusion Criteria
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NurOwn: 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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Emergency Preparedness For People Living With ALS
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Plan ahead. Severe weather, power outages, or medical emergencies pose unique challenges to those living with ALS. Join us for an overview of key items to include in your emergency preparedness plan.
Monday, August 19, 2019
2:00 p.m. EDT
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A VOICE IS A POWERFUL THING.
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All of us at
The ALS Association Greater Sacramento Chapter are grateful to the
C
hristopher & Dana Reeve Foundation and
Google Nest for joining forces to improve independence by providing up to 100,000 free Google Home Minis to individuals living with paralysis and their caregivers. In celebration of the anniversary of the Americans with Disabilities Act (ADA), this is the biggest tech give-away ever for the paralysis community living in the U.S. to achieve greater freedom at home.
Learn more and see if you’re eligible for a free device!
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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.
The ALS Association led in the fight to establish the National ALS Registry by working with Congress to enact the ALS Registry Act and securing federal funding to design, build, and implement the National ALS Registry at the Centers for Disease Control and Prevention/ Agency for Toxic Substances and Disease Registry (CDC/ATSDR).
This nationwide research program may help research's learn who gets ALS and why and may advance the search for the cause, treatment and cure. To enroll in the National ALS Registry today click on the ALS Registry button.
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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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