Support Services

At this time, the Lois Insolia ALS Clinic advises against in-person visits for the safety of our patients.

There are a few options for virtual care during this time including a phone consult, video visit, or MyChart encounter. If you have a scheduled visit within the coming weeks, our care team will be reaching out to explore the appropriate option for your care.

You can also send a message to your physician using MyChart to ask any non-urgent questions.

For all other urgent medical matters, please call Northwestern Medicine at 312 695 7950 and ask to page the neurologist or pulmonologist on call (you will need to provide your doctor’s name).

If you require emergency medical attention, please call 911 to access your local emergency services.  Please also call the ALS Clinic to let them know you are seeking medical assistance.

As the COVID-19 situation continues to evolve, we know it is of particular concern for the ALS community, both for clinical care and research trials.

To help address some of your questions and concerns, we recommend viewing te following webinars:

• Impact of COVID-19 on ALS Clinical Research (March 27, 2020) – Northeast Amyotrophic Lateral Sclerosis Consotrium (NEALS)
• HEALEY ALS Clinical Trial (April 8, 2020) – Sean M. Healey & AMG Center for ALS

• COVID-19: Impact on Research and Clinical Trials Globally and Risk for People with ALS/MND (April 9, 2020) – International Alliance of ALS/MND Associations

If you are currently participating in a clinical trial, contact your trial care team to determine if there are any changes to protocol or timeline.

The Coronavirus (COVID-19) outbreak is an evolving situation and one we are monitoring closely.

Updates regarding specific special events can be found below:

• Les Turner ALS Foundation Tag Days Drives – Go Virtual With Us!

• Every 90 Minutes and Evergreen Circuits are providing ventilator filters from Philips Respironics to people living with ALS who are unable to get them through a DME supplier. To apply please visit this website.

• COVID-19 Fund: The Healthwell Foundation is offering $250 grants to help people cover costs related to COVID-19 such as delivery of food, medications, transportation and telehealth visits. Learn more about the eligibility details at this link.

• Fund for ALS: The Healthwell Foundation is also offering assistance with the prescription drugs and biologics used in the treatment of ALS. To learn more, please visit this website. 

• Hope Loves Company created programs and resources that can be accessed virtually to offer opportunities for fun and relaxation.

• Seven Ways to Cope with Uncertainty during the COVID-19 Crisis

• The Great LiveLikeLou Outdoor Clean-Up for ALS Families program matches individuals or families living with ALS across North America with individual volunteers from the Phi Delta Theta Fraternity for occasional arms-and-legs outdoor support in a manner that protects everyone from unnecessary exposure to illness or other risks. Spring cleaning. Yardwork. Garage clean-out. Simple outdoor repairs and chores. There is no fee or obligation from families in exchange for this support, and families may cancel the arrangement at any time. Learn more by watching this brief video.  You can register for the program here.

• Through a new program, the National Organization for Rare Disorders (NORD) will provide financial assistance to eligible patients, covering up to $1,000 annually. The new program provides funds for essential expenses including, but not limited to, unexpected utility expenses; cellular or internet service; emergency repairs to car, home, or major appliances; and rent or mortgage payment assistance. Interested patients and families can reach out to NORD to find out if they meet eligibility requirements. For more information and to apply, please contact NORD by telephone at 203 242 0497, via email at COVID19assistance@rarediseases.org.

• Your ALS Guide is donating 5,000 FDA-approved surgical masks to people living with ALS, caregivers, and ALS professionals in the United States. Visit Masks for the ALS Community page, enter your mailing address, and they will ship five masks at no cost.