Chapter Newsletter
December 2018
A Note from our Executive Director


Greetings!

As we close out the year and prepare to celebrate the holidays with our families, I would like to extend my heartfelt gratitude to all those who made this year so special at the Chapter. 

To the many volunteers who help us bring our events to life by contributing their time and talents, we couldn’t do what we do without your support! This year we had over 100 special individuals who stepped up and out to help our events shine.

To our board of directors, our chapter wouldn’t be what it is today without your vision, guidance and dedication to helping us create a world without ALS. 

To the donors and corporations who gave generously throughout the year, we thank you for your partnership. Your investment into our mission critical programs fuel the work we do every day. Because of your philanthropy, we continue to offer the highest level of integrated programming to care for over 600 people impacted by ALS in Northern California.

2018 Highlights include:

  • Over $30,000 in direct financial-aid was granted to the ALS community through the PALS 4 Life program to support patients with in-home caregiving, emergency transportation assistance, durable medical equipment and speech communication devices.
  • We answered over 3,300 calls and emails from patients needing information, referrals and support.
  • We granted $125,000 to The UC Davis ALS Association Certified Center of Excellence.
  • We facilitated 26 Support Group Meetings in the Greater Sacramento Region.
  • Over 240 electric wheelchairs, speech communication devices, patient lifts, and nutritional supplements were provided to patients to improve quality of life.
  • We contributed over $30,000 to the nationally directed global ALS Research Program.
  • We continued to make our voices heard locally and nationally, to lobby for legislative support of the ALS community.

Everything we do at the  ALS Association Greater Sacramento Chapter is in support of those impacted by  # ALS . By integrating the care, we provide, the policies we advocate for, and the global research we advance, we will fulfill our vision of a world without #ALS. 

If you have not made your annual tax-deductible donation, please consider doing it today.   Together we can do so much more to support those living with ALS.
From my heart to your home I wish you the best this holiday season!

Amy
Holiday Luncheon

Please join us for our annual pALS and cALS holiday luncheon this Saturday, December 8th, from 11:00am to 2:00pm. Bring your favorite dish to share with everyone and we will supply the hot toddies and mimosas! If you are interested in attending, please respond to this email for an official evite.
2018 Walk to Defeat ALS
We now have our 2018 Walk to Defeat ALS photo album up on our Facebook page! Click on the picture to the right to access our pictures and feel free to tag yourself in the comments and share the images!
Support Groups
Support is something we all need during certain stages of our lives in order to cope with difficult situations. For most people with ALS and their families, a diagnosis of ALS is a stressful life event. It's important to see that people with ALS and family members are not completely unique, and that others also experience the similar emotions. In addition, compassion fatigue is a problem that is often faced by ALS families. By utilizing a support group, the spouse or primary caregiver is able to talk with others experiencing similar feelings of fatigue and frustration. For many, finding out that these feelings are normal is a relief.
 
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 experiences, fears, concerns, and hopes. A support group can provide a reminder that there is hope for a good quality of life.
 
The ALS Association currently provides monthly support group meetings for ALS patients (PALS), their families, caregivers, friends throughout 24 Northern California Counties—for more information on the dates, times and locations please click below.
Cars for a Cure

This holiday season, you can clear out some space AND help out a good cause! Find more information on donating your vehicle to the ALS Association by clicking below.
The VA and ALS: An Overview for Veterans with ALS and Clinicians
Speakers: Christina Fournier, MD, MSc, Emory University, Atlanta VA Medical Center & Colin Quinn, MD, Penn Comprehensive ALS Center, CMJC VAMC ALS Multidisciplinary Clinic
Thursday, January 17, 2019
9:30am PST
ALS Organizations Collaborate to Advance New Therapeutic into Trials
Several ALS organizations announced on Wednesday that the first participant was successfully given a dose of AT-1501 in the first in-human trial of the potential treatment for ALS. AT-1501 was developed by the ALS Therapy Development Institute (ALS TDI), with support from The ALS Association, ALS ONE, and ALS Finding a Cure®, and is being brought into trials by Anelixis Therapeutics, Inc., a for-profit subsidiary of ALS TDI. 
A Husband and Caregiver's 'ALS Experience'

Ronnie selflessly cared for Linda, his wife of 20 years, throughout her fight with ALS.
“The hardest thing anyone can experience is watching a loved one slowly die [when you] can’t do anything about it,” he said. “It doesn’t matter what disease they have.”

Potential New Therapy Silences SOD1 Gene in Non-Human Primates

In a promising new study by Drs. Robert Brown and Christian Mueller at the University of Massachusetts Medical School report that a type of viral gene therapy using synthetic microRNAs (miRNAs) targeting the ALS SOD1 gene is safe and effective in nonhuman primate macaques (monkeys). 
Mitsubishi Tanabe Pharma America to Present Data Showing Oral Version of Edaravone Processed Similarly to IV Version in Patients
Mitsubishi Tanabe Pharma America (MTPA) will present initial data on efforts to create an oral version of edaravone, a key drug in the treatment of ALS that is currently only available intravenously, during the International Symposium on ALS/MND in Glasgow, Scotland. The symposium will be held Dec. 7-9. MTPA is expected to present results that demonstrate that oral edaravone is processed in the body in the same manner as the infused formulation.
People with ALS Should Have Access to the Medicare Home Health Benefits they Deserve

The ALS Association is ramping up its efforts to make sure people with ALS who rely on Medicare have access to home health care benefits.
“Many people in the community, including people with ALS, people within our chapters, and our clinical partners, have told us about the serious and persistent challenges faced by Medicare beneficiaries with ALS,” said Dr. Neil Thakur, executive vice president for mission strategy at The ALS Association.
ALS Association Statement on VA Report on Mishandles Claims from Veterans with ALS

The ALS Association is deeply concerned that the Department of Veterans Affairs (VA) has mishandled claims and deprived some veterans with ALS of the critical financial support they need, as reported in a VA Office of Inspector General Report released on November 20, 2018. Any delay in benefits for people with ALS is unacceptable.