The ALS Therapy Development Institute (ALS TDI) recognizes that many in the ALS community may have questions and concerns related to the spread of the coronavirus, known as COVID-19. We take the safety of our community very seriously and we will continue working to keep you informed.

Update as of 4/3/2020: As the COVID-19 situation continues to evolve, please be sure to check with your local and federal guidelines for the most up to date information.

About COVID-19

COVID-19, or the Corona Virus 2019, is a disease caused by the virus known as the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The signs and symptoms may appear anywhere from 2 to 14 days after exposure and can include fever, cough, and shortness of breath or difficulty breathing.

The World Health Organization (WHO) recently declared it a pandemic and many states and countries, including Massachusetts, have put procedures in place to try to stop the spread.

The severity of symptoms can range from mild to severe. Older people and people with chronic medical conditions, such as ALS, are at higher risk for severe illness.

Tips to Stay Safe

The Center for Disease Control (CDC) recommends washing your hands often, frequently cleaning and disinfecting touched services and avoiding touching your eyes, nose, and mouth with unwashed hands as much as possible.

They also recommend practicing social distancing which involves staying home if you are sick and avoiding close contact (6 feet-about two arm lengths) with people who are sick or may have been in contact with people who are.

For those with underlying medical conditions, it is recommended to stay home as much as possible and it is especially important to avoid large crowds and unnecessary travel such as cruises or air travel when possible.

Considerations for People with ALS and Caregivers

The ALS Societies across Canada (ALS Canada) recommends that people with ALS keep 30 days of medical supplies and medications as well as nutritional supplements and other necessities like tube feeding supplies on hand. Storing extra food can minimize the number of trips to the grocery store that are necessary.

ALS Canada along with the Muscular Dystrophy Association (MDA) recommends that People with ALS discuss with their caregivers, home care managers or agency about backup caregivers should their primary caregiver become ill. They should also check to make sure that caregivers do not have any symptoms and haven’t traveled to affected areas within the last 14 days.

Caregivers should take extra precautions when interacting with people with ALS. They should make sure to thoroughly wash their hands before assisting people with ALS with daily tasks such as feeding, bathing, and dressing to reduce the risk of spreading the disease.

If You Have Symptoms

If you have any of the COVID-19 symptoms or believe you may have been exposed to someone with the disease, contact your healthcare provider and seek prompt medical care.

Avoid Misinformation

It is also important to avoid misinformation about the disease. You should make sure that you are obtaining news and updates about COVID-19 from reliable sources and experts such as the CDC or WHO.

This is a rapidly changing situation and it is important to stay up to date on everything that is happening. At ALS TDI we are constantly monitoring the situation to provide as much information as possible to the ALS community.

Contact Us

For additional information or questions, please contact us today.