ALS Ice Bucket Challenge Progress

Our first priority is the health and safety of people with ALS, their caregivers and family members. Thus, due to the rapidly evolving nature of the Coronavirus outbreak and the serious risk to people with ALS of being exposed, please note the following care protocol changes and general announcements:




Care Protocol Changes: (for people with ALS, family members, and caregivers)


In order to minimize potential exposure to the Coronavirus, effective immediately the Chapter is suspending the following in-person activities:


  • In-Person Home Visits

    Our care services team is committed to supporting people with ALS during this time via phone, email, and WebEx (a remote face-to-face option).
  • Resource Groups

    We are encouraging groups to continue meeting remotely via conference call, WebEx and Facebook. Contact your group facilitator for additional information.

  • Van Transportation (medical and non-medical trips)

  • Visiting Volunteers

    Volunteers who visit people with ALS have been asked to suspend making face-to-face visits, but are encouraged to visit virtually via phone, online, and text.


  • We want to ensure that your questions are answered, and your needs are met. Chapter social workers are ready to assist all our ALS families. You may also contact Care Services at 215-643-5434 and select prompt 3.

  • Our ALS Treatment Centers and Clinic partners are assessing developments and continuing to adjust their protocols. Your clinic is happy to speak with you about their response and answer questions about your upcoming appointments. Your Chapter social worker is also happy to assist you.

  • Steve Spaulding is communicating with all our clinic partners to exchange protocols and best practices for the benefit of everyone in our shared mission to serve you.

  • While we have had to make difficult decisions to ensure the health and safety of our ALS families, please note that we are able to respond to this issue because of the programs you make possible. Thank you to everybody who has supported our mission to ensure that people with ALS have home ramping, care, education, medical equipment, and speech technology so that they and their families can be as prepared as possible during an emergency.


General Announcements:


Carriers of the Coronavirus can initially be asymptomatic for a period of time. Thus, it is impossible to know who has been exposed (including you). Be proactive in your interactions with others. This is particularly important for yourself or a loved one with ALS.


The CDC provides this guidance:


Information About COVID-19 Vaccines for People with ALS


Telemedicine is an important alternative for you to receive remote care and support from healthcare professionals. Talk to your clinic and other healthcare providers about options they have available. Independence Blue Cross recently announced these special benefits to their subscribers:

  1. Testing:
    Independence will cover and waive cost-sharing (such as co-pays and coinsurance) for the COVID-19 test when performed at a hospital or an approved laboratory.

  2. Should members be using telemedicine?
    To help reduce potential exposure, Independence encourages members to utilize telemedicine services if they are available as part of a member’s plan. To support use of these services, Independence will waive co-pays for telemedicine visits for the next 90 days.

  3. Will Independence Blue Cross waive prescription drug refill limits?
    Independence has lifted prescription refill restrictions, such as the “refill too soon” limit, for members in states that have declared a state of emergency because of the virus.

    We suggest that everyone check with their specific health insurance provider to see if there may be similar policy changes and/or benefits in response to the Coronavirus outbreak.

We encourage you to email Steve with general questions about ALS and the Coronavirus at


Thank you for your attention! We all look forward to things returning to normal as soon as possible.