Greater Sacramento Chapter
pALS News
July 9, 2019
Spotlight
Join us at our newest support group!

The ALS Association Sacramento Chapter serves 24 counties in Northern California, including the greater Tahoe area. We are excited to expand our support offerings to better reach all of those impacted by ALS in our territory.

Tahoe Support Group
Thursday, July 18th
12:00pm-2:00pm
Location is TBA.
Care Services
The care services staff provides free comprehensive programs and services to families living with ALS.
Equipment Loan Closet
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. 
Upcoming Support Groups Meetings

Stockton Support Group—Wednesday, July 10
2:30-4:30pm 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.

*New Group* Tahoe Support Group Meeting-- Thursday, July 18
12:00pm-2:00pm
Location TBA.
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, July 20
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, July 23
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.

Chico Support Group—Thursday, July 25
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.

Placer County Support Group -- Thursday, August 1
11:30am-1:30pm at the Roseville Executive Suites
1100 Melody Lane, Roseville, CA 95678
This monthly drop-in group is open to anyone whose life has been touched by ALS. Refreshments 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.
Upcoming ALS Multidisciplinary Clinics
 
Forbes Norris ALS Multidisciplinary Clinic --Thursday, July 11
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., July 17
The location of the clinic is 2025 Morse Avenue, Sacramento, CA 95825. For questions, please contact nrichards@alssac.org .

UC Davis ALS Multidisciplinary Clinic-- Friday, July 19
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 


*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
Resources
Options For Communicating Your Medical Needs
In The Event Of An Emergency
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
  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”.
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.
Caregiver Support- Create a Caregiving Community:
New Mobile App
Care Connection: A Way to Help Your Family
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.
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.
Research
Clinical Trials
BrainGate2:
Inclusion/Exclusion Criteria
NurOwn: Inclusion/Exclusion
Criteria
The REFALS Trial
Information
Communications
Van for Sale
2 015 Dodge Caravan SE
  • Asking $24,000 (With Warranty)
  • (Optional partial vehicle trade)
  • 14,000 miles
  • FR Conversions
  • Manual rear ramp, and Q restraints.
  • 2 front bucket seats, and 3 rear seats.
  • transferable bumper to bumper warranty until 2026 (no deductible in chico, $100 any other authorized repair facility).
  • Not a factory paint job-this was a fleet vehicle with very low miles.

Call or Text (530) 852-4759
Take Action
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.
Sign Up for the ALS Registry !
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.

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.
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!
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.

Warm Regards,

Care Services Team