What you can do, Cares Events, Updates and More

With the coronavirus (COVID-19) situation evolving, CureDuchenne is closely monitoring the latest developments using the World Health Organization, Centers for Disease Control, local health authorities and close healthcare partners as sources of up-to-date information.  In light of this, we’re writing to highlight a few important areas for the Duchenne community and encourage you to stay informed by following us on Facebook and looking at the CDC website.

“We are confident our patients will do well as like in previous outbreaks of Swine flu and H1N1 if we all are mindful of measures to minimize viral spread.”

– Dr Brenda Wong, Founding Director, Duchenne Program, UMass Memorial Health Care

We understand those living with Duchenne and their loved ones may be facing a high level of uncertainty during this serious health situation. Patient safety is our highest priority.  As a company, we are taking COVID-19 seriously and are committed to keeping the communities we serve updated with any new information we learn that could help inform health decisions.

What You Can Do to Keep Yourself and Your Family Healthy1

It’s important that everyone be mindful and take everyday preventive actions to stay healthy.  As a best practice for any airborne virus, avoid close contact with people who are sick, avoid touching your eyes, nose, and mouth and stay home when you are sick.  Simple tasks like covering your cough or sneeze with a tissue, then throwing the tissue in the trash and cleaning and disinfecting frequently touched objects and surfaces using a regular household cleaning spray or wipe are also advised.  And finally, wash your hands often with soap and water for at least 20 seconds.

The Duchenne Program at UMass Memorial Health Care advises the following for Duchenne patients and their families:

  1. Personal hygiene – Wash your hands or use hand sanitizer, and don’t touch MEN (Mouth, Eyes and Nose).
  2. Social Gatherings – Stay away from social and community gatherings during the transmission period of the virus.  Folks staying home cuts down the risk of acquiring and disseminating the virus to others.
  3. Travel – If travel or going out is necessary, Duchenne patients on steroids should wear a mask in places where there are crowds.
  4. Symptoms – If showing signs of fever and a cough, go see your pediatrician or Physician. They will check out your lungs, listen for crepitations, take a chest X-ray and test for coronavirus (COVID-19).
  5. Treatment – With no lower respiratory tract findings, treatment strategies are similar to managing flu – hydration, mucolytic and airway clearance to help minimize the spread to lower respiratory tract.
  6. Seek medical help – Monitor your fever and shortness of breath.  If worsening, see your pediatrician or Physician for evaluation and admission.

*Reminder from the Duchenne Program UMass team:

If there is any history of exposure to cases of COVID-19, please self-quarantine and do not go our including to hospitals, clinic appointments and EDs if asymptomatic.

Updated Educational and Community Event Schedule

We are erring on the side of caution for the below community events to avoid any potential health risks. Please note, some events have changed to virtual events, while others have been rescheduled as in-person events for later in 2020. Please email with any questions regarding an event in your area.


3/14/2020 | Live Virtual Session | Knoxville, TN and Billings, MT communities

4/18/2020 | Live Virtual Workshop | San Diego, CA and surrounding community

4/25/2020 | Live Virtual Session | Baltimore, MD community


8/22/2020 | Workshop and Biobank | Phoenix, AZ

9/12/2020 | Session | Boston, MA

11/7/2020 | Professional Course | Billings, MT

12/5/2020 | Workshop and Biobank| Sacramento, CA


Please contact your healthcare provider regarding any specific questions or access information about travel advisories from the CDC’s website directly.  The CDC has also issued statements on large community events which adds to the information and concerns we have with these kinds of events that we offer to the community.

Please note, we have made the decision to adjust the above events solely based on the needs of individuals affected by Duchenne and our concerns for the well-being of the Duchenne community.  We don’t want anyone to be unnecessarily panicked or alarmed, it is simply a proactive, precautionary decision made by CureDuchenne.  As mothers, friends, community members, families and more, the safety of the Duchenne community is simply not worth any risk of illness.

Warm Regards,



Related Posts

Share This Page

Make an Impact

You can advance the care, treatment and cure for Duchenne muscular dystrophy. Contributions in any amount can truly make a difference and can be credited to a fundraiser or event from the list below.