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Coronavirus and our ALS community

The well being of the ALS community is always our top priority. With the developing news of the novel coronavirus (COVID-19), The ALS Association Golden West Chapter is closely following guidance from the Centers for Disease Control (CDC) and the World Health Organization (WHO), as well as state, county and local public health agency mandates.  As we continue to adapt to this evolving situation, we are guided by our Chapter’s high standards of accountability and transparency, and will continue to take action in the best interests of all. Below are some of the details about our Chapter’s response:

What We Are Doing

 
  • Staying Informed and Adapting to Changes – The Golden West Chapter is continuing to realign our programs to ensure both safety and effectiveness. We are making rapid decisions and taking real-time actions focused on the best interests of all Chapter stakeholders, including people with ALS, caregivers, and our employees. We are continually evaluating our activities in accordance with the CDC and DPH guidelines.

  • Modifying Program Strategies – The Golden West Chapter is leveraging our capacity to provide remote support and utilize technology for meaningful care services interventions. We have transformed our service delivery model and continue to be a trustworthy, expert resource for the ALS community.  Chapter staff are reaching out and connecting with the families we serve through phone, email, and video conferencing. We are partnering with the teams at all of our affiliated ALS clinics and centers, and are working together to ensure that all people with ALS have the opportunity to be connected to Chapter services.

  • Educating and Supporting Our Team – The Chapter has created an internal action plan to provide clear guidance for continued and safe operations during the pandemic. We communicate frequently with our staff members to ensure that they are aware of the latest developments and prevention techniques. We are frequently cleaning surfaces with disinfecting, alcohol-based cleaners and providing hand sanitizers to staff members. We will ensure the availability of hand-washing stations and hand sanitizer at Chapter events.

Care Services Updates

 
  • People with ALS and their families come first in everything we do. We are acutely aware that people with ALS are at an increased risk for respiratory problems associated with viral infections.

  • At this time, the Golden West Chapter has transitioned to online home visits and support group meetings. We are continuing to evaluate our planned activities scheduled in May and beyond, in accordance with the CDC and state DPH guidelines. We will provide updates via our website, social media channels, and directly to participants via email. We will be leveraging technology to provide similar support services remotely and are committed to ensuring continuity of care.

  • We have launched several new educational video series and webinars:

    • - ALS 101 presented by Dallas Forshew, BSN, RN, to help educate the public about the disease as well as about important resources available for families facing ALS.

    • - Our ASK ME webinar series featuring topics of interest to the ALS community presented by notable ALS clinicians and researchers. We are so grateful to our generous sponsor, Mitsubishi Tanabe Pharma America, for supporting the Golden West Chapter in providing this informational resource, free-of-charge, to our ALS community

  • We know that many of you are preparing to have phone and video visits with your medical providers, and may not be familiar with "how to" use one of the most common systems called Zoom for Telehealth. The Chapter has created this helpful online resource to assist you in getting started.

  • We understand how important it is to have a shared community of families facing ALS who are on the same journey, and we encourage you to reach out to those in your group. If you need assistance in contacting someone, please connect with your Care Manager to help facilitate this connection, or contact us at careservices@alsagoldenwest.org.

Community Outreach Updates

 
  • The ALS Association Golden West Chapter promotes everyday preventive health actions to all our participants and staff, in accordance with CDC and the state DPH guidelines.

  • The Golden West Chapter is transforming our community outreach in-person events through May into virtual participation opportunities so we can continue the fight to defeat ALS. We are committed to advancing the search for effective treatments and cures, in spite of the challenges intrinsic to this time.

  • We are continuing to evaluate our planned activities scheduled in May and beyond, in accordance with the CDC and state DPH guidance. We will provide updates via our website, social media channels, and directly to participants via email.


How You Can Help the ALS Community

 
  • Keep Yourself and Others Healthy – We are promoting everyday preventive health actions and to follow to the basic prevention techniques and guidelines for higher risk communities from the CDC, which include:

    • - The virus is thought to spread mainly through respiratory droplets produced when an infected person coughs or sneezes. It is a good idea to avoid close contact with people who are sick and practice social distancing, and maintain about a 6 feet spacing between yourself and other people. Please also follow all guidelines for wearing facial masks.

    • - Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. Always wash hands with soap and water if hands are visibly dirty. Avoid touching your eyes, nose, and mouth.

    • - Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe. Please consider disinfecting if you receive any new durable medical equipment (DME) or any external deliveries/packages.

    • - Fever, cough, and shortness of breath are the main symptoms of coronavirus. Call your health care provider if you suddenly develop any of those symptoms, or with any specific questions or concerns.

    • - More information about coronavirus is detailed on the website for the CDC. There are also printable copies of helpful resources available in English, Spanish, and Chinese. You can also find helpful information in this Q & A from the World Health Organization (WHO).

  • Be Kind – We are all in this together. During stressful times people may direct their fear or anxiety towards others. By learning the facts of COVID, we can help counter any potential stigma tied to the virus. Viruses do not target specific racial or ethnic groups. We stand together as one community promoting the safety and well-being of all.

  • Get Involved – ALS is unrelenting, and so is our resolve. These current challenges underscore the need to join together in support of our ALS community.  Our community outreach activities, like our Walks to Defeat ALS and Rides to Defeat ALS, are a year-round effort to raise awareness and generate significant and necessary revenue that brings help and hope to people living with ALS and their families. Our advocacy efforts are critical to advancing our Public Policy initiatives on behalf of the ALS community. Now more than ever, people living with ALS and their loved ones need the resources that our Chapter provides.

  • Make a Gift – COVID-19 is creating new medical and public health challenges, causing economic uncertainty, and impacting vulnerable populations, like people living with ALS and their families. The Golden West Chapter’s response during this pandemic in alignment with our mission and vision, but requires unexpected resources. Please help us continue to meet the needs of our ALS community. 100% of your donation will support people with ALS and their families impacted by COVID-19.

The Golden West Chapter remains unwavering in our commitment to serve the largest ALS community in the United States, and to our vision to create a world without ALS. We thank you for your strong support of the Chapter’s efforts. Everything that we do on behalf of people with ALS and their loved ones is made possible by people like you. If you have questions or concerns for the Golden West Chapter, please reach out to us at info@alsagoldenwest.org.

--- Updated May 7, 2020.