ALS Association Greater Sacramento Chapter

"My seemingly normal teenage life was flipped upside down. Almost overnight, I became a child caregiver to my dying mother." Mackenzie Anderson, #ALS Advocate Read more of Mackenzie's inspiring story: https://medium.com//young-social-impact-heroes-why-and-how

We love our caregivers! Those who provide care and support to their families, friends, and loved ones with ALS are the backbone of our community. However, caring for someone with ALS is emotionally and physically difficult. Click here https://www.als.org/navigatin/for-caregivers/coping-burnout for some tips on avoiding burnout. We also encourage all caregivers in our community to submit your responses to the Chapter survey (open through the end of the month) to help ensure that our programs and services are the best they can be. You come first in everything we do and every decision we make, and your input is invaluable! https://www.surveymonkey.com/r/2KZ7WDC

ICYMI: Dr. Sarah Parvanta, director of the ALS Focus survey program, was recently on the Connecting ALS podcast to discuss how #ALS Focus is working to understand caregiver needs and make sure we are caring for our caregivers. Listen now at http://bit.ly/36G0HYq

Today we remember the man behind these words. He gives us guidance and inspiration as we navigate the challenges of the world and push to always keep looking forward. #MLK #dayofservice #EndALS #OurALSCommunity

We want to give a shoutout to our friend and partner in the fight against ALS, Josh Nuss, Executive Director of The ALS Association Iowa Chapter. He was honored recently as Iowan of the Week by U.S. Congresswoman Cindy Axne for his 15+ years of service helping Iowans living with ALS. Near and far, we are #ALSInThisTogether and proud to serve our ALS community in partnership with other incredible Chapters across the country. Way to go Josh! Check out Representative Axne’s statement for the Iowa Congressional record here: https://axne.house.gov/media/iowans-week/josh-nuss

Today marks the start of Feeding Tube Awareness Week, with a goal of educating the public about the medical reasons behind feeding tubes, the challenges that families face, and day-to-day life with tube feeding. Many people living with ALS elect to place a feeding tube when eating and consuming enough nutrients becomes too difficult or unsafe. You can find answers to some common questions surrounding feeding tubes in the link below. We encourage you to work with your medical provider and connect with our Care Services team at (916) 979-9265 for more information https://www.als.org//r/fyi-information-about-feeding-tubes

The impact of #ALS on breathing is one of the most daunting aspects of the disease and one for which people with ALS and their caregivers should prepare for early in their journey. To help explain the respiratory changes to expect, The ALS Association has developed a series of videos and resources for people living with ALS and their families to better understand symptoms and help improve quality of life. Learn more: http://bit.ly/3oLe5S7 We want to thank our partners at @VOCSN who helped make this project possible. #RespiratoryCare

We're all in this together! Find support and connect with others who are impacted by ALS tomorrow, February 9th, at 1:00 PM. To register, please contact Care Services at (916) 979-9265 or [email protected]. http://websac.alsa.org//PageNavig/SAC_8_SupportGroups.html

We have followed Survivor alum Jonathan Penner and his wife Stacy's ALS journey and are saddened to hear that Stacy lost her battle at age 56. She was a warrior who inspired many during her courageous fight with ALS and through her work as a filmmaker. Our deepest condolences to Jonathan Penner and the family during this difficult time. Read more: https://bit.ly/3nyJRR3

UPCOMING WEBINAR: Join the National Organization for Rare Disorders, Inc. (NORD), The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association for a special webinar, COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community to be held tomorrow, 1/14/21. FDA and CDC leaders will discuss the recently authorized vaccines and answer questions from the rare disease community. Register now: bit.ly/Vaccine-Webinar

The current surge in #COVID19 cases across the country warrants extra attention by people with #ALS and their caregivers. Stay up to date with the latest vaccine info at https://bit.ly/3oDcPjZ.

UPCOMING WEBINAR: While we search for a cure, we want all people living with #ALS to have the highest quality of life. That includes getting the care and support they need to be comfortable. Join us on Monday, January 25th for a webinar that explores the features and benefits of including hospice care during a journey with ALS. Register today: https://bit.ly/38wRjaN

This week on Connecting ALS, Mike and Jeremy talked to Senator Sheldon Whitehouse of Rhode Island to look back on the passage of the ALS Disability Insurance Access Act. https://www.connectingals.org/

Please join us tomorrow, January 12th, at 1PM for the Making Connections Support Group Meeting. Register by contacting Care Services at 916-979-9265 or [email protected]. #alsinthistogether #ouralscommunity

Friendly reminder, tomorrow is the Sacramento Support Group Meeting. The caregiver (friends and families welcome) meeting starts at 10:30 am. The pALS (people living with ALS) meeting begins at 12:00 PM. To register, call Care Services at 916-979-9265 or email [email protected]. #OurALSCommunity #ALSinThisTogether

On Veterans Day, we celebrate the service of our nation's heroes, military veterans who have served in the U.S. Armed Forces. As you honor these incredibly courageous individuals, we ask you to remember those veterans who are fighting another battle. You can learn more about how ALS impacts military veterans, and what programs are available to help at www.alssac.org or call our care services team at (916) 979-9265.

HUGE NEWS! The Senate has recommended $40M for the Department of Defense (DOD) ALS Research Program (ALSRP) and $10M for the CDC National ALS Registry in their FY2021 appropriations bills. Thank you to the #ALS community and our ALS champions in the Senate for making this happen! #ALSAdvocacy #ALSResearch

This Thursday, November 12th, we're hosting one of the most anticipated events of the year.... The 20th Anniversary Walk-Ademy Awards! We can't wait to celebrate all of YOU for leading your teams and Walking Your Way this year! Everyone is welcome and encouraged to join as we bring our community together, reflect on our unique Walk experiences, and hand out key player awards to those who went above and beyond to help us Unlock ALS! Please RSVP to Stefanie at [email protected] by the end of today to receive the Zoom link.

Time is running out to maximize your 2020 charitable giving deductions! The Coronavirus Aid, Relief, and Economic Security Act (CARES Act) was enacted this year, providing extensive relief for individuals, businesses, medical centers and nonprofits. Some provisions of the CARES Act facilitate charitable giving to protect nonprofits like The ALS Association Greater Sacramento Chapter. Click here to learn more: https://files.constantcontact.com//c76199cd-ee46-4dfd-a2b4

UPCOMING WEBINAR: Join us on December 15th to hear from Dr. Merit Cudkowicz about the results of the REFALS trial evaluating the effect of oral levosimendan (ODM-109) on respiratory function in people with #ALS. Register today: https://register.gotowebinar.com/regist/4437754683829999375

Please join us tomorrow, November 10th, at 1PM for the Making Connections Support Group Meeting. Register by contacting Care Services at 916-979-9265 or [email protected]. We look forward to seeing you! #alsinthistogether #ouralscommunity

November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Visit http://websac.alsa.org//PageNavigat/SAC_8b_caregivers.html to learn more about resources available to family caregivers. #ALS #NationalFamilyCaregiversMonth

Clinical trial participants who took AMX0035, a promising new drug therapy developed by Amylyx, showed a statistically significant 6.5-month increase in survivability compared to participants who did not receive the drug in the initial trial, according to data published in the journal Muscle and Nerve in October 2020. These findings validate calls led by The ALS Association and I AM ALS for Amylyx and the FDA to make AMX0035 available as quickly as possible. To read more, click here: https://bit.ly/3mX9mvc To sign the petition, click here: https://als.quorum.us/campaign/28538/

ALS is a disease that affects muscle movement. In some cases though, it can also cause changes in a person’s thinking and behavior. About 50% of people living with #ALS will eventually experience some change in cognitive ability or behavior, with those changes ranging from minor symptoms to dementia. Learn more: https://bit.ly/35InMbz

In honor of National Family Caregivers Month, Linda Hays shares her unique perspective on caregiving for a loved one living with ALS. Linda cared for her brother Joe, who lost his battle with ALS in 2009. Sadly, 10 years later, Linda's husband Dave was also diagnosed with ALS. With no familial connection to Joe outside of marriage, Dave's diagnosis came as a shock to Linda and their family. She was again thrust into the role of caregiver and serves that role with her signature grace and kindness. Read her full interview in the latest eNews: https://conta.cc/32cXaP6. #NationalFamilyCaregiversMonth #OurALSCommunity

UPCOMING WEBINAR: Advancing Technology Keeps Pace with Changing Seating and Mobility Needs. On November 16th at 11:00 AM, Jennith Bernstein, PT, DPT, ATP/SMS and Shawn Sexton, who is living with ALS, discuss the benefits of seating and mobility features supported by advancing technology. Register here: https://bit.ly/34Y7H2p

Being an ALS caregiver is stressful, but the majority of people acting as caregivers also say that they experience a sense of purpose due to their caregiving role. National Family Caregivers Month is a time to recognize, support, and empower caregivers who give selflessly to care for their loved ones. #ALS #NationalFamilyCaregiversMonth

This year, we're closer than ever to waiving the 5-month waiting period for Social Security Disability Insurance. More than two-thirds of the House and Senate have co-sponsored the #ALS Disability Insurance Access Act. Send a message to congressional leaders today urging them to schedule a vote and pass the bill. Take action: https://bit.ly/37EhtGB