Cure SMA Announces Event Cancellations, Recommendations on Coronavirus, and Update on Annual SMA Conference

As coronavirus, also known as COVID-19, continues to spread in communities, Cure SMA has also been closely tracking the situation. The health, safety, and well-being of the entire SMA community is important to us. While community engagement is a longtime Cure SMA priority and several opportunities for involvement are fast approaching, we are cognizant of the need to protect those with SMA who may be more vulnerable. Because of this, Cure SMA has made the decision to cancel all events (i.e., galas, dinners, Walk-n-Rolls, Summits of Strength) for the remainder of March and is currently assessing the possibility of cancellation of events in April and beyond.

We are also carefully evaluating the potential impact on the upcoming 2020 Annual SMA Conference in Orlando, Fla. (June 11-14, 2020). With approximately 3 months until the start of the Conference, we are actively monitoring the impact of COVID-19 in the U.S. so we can make a decision that is in the best interest of the SMA community. Currently, we remain optimistic about hosting another successful and well-attended Annual SMA Conference this Summer.

Questions on Event Cancellations and Annual Conference Planning

What Cure SMA events will you be cancelling?

Cure SMA has made the decision to cancel all events (i.e., galas, dinners, Walk-n-Rolls, Summits of Strength) for the remainder of March and is assessing whether to cancel events in April and beyond. If there are any changes to an event that you have already registered for, an email will be sent by Cure SMA with further details.

I am scheduled to attend a Cure SMA event that is cancelled. Will you be rescheduling it?

At this time, we are not certain which, if any, events will be rescheduled. Cure SMA will alert event registrants as soon as we know more. In the meantime, if you have any questions related to a Cure SMA event, please reach out to [email protected], noting your event name in the subject line.

Should I still plan to book my travel and accommodations for the Annual SMA Conference in Orlando this June? If I already made my plans, should I cancel my reservations?

The Annual SMA Conference is not cancelled. Registration remains strong and we remain optimistic about hosting another successful and well-attended Annual SMA Conference this Summer. If you have already registered for the 2020 Annual SMA Conference and booked your travel and accommodations, we recommend that you keep your plans in place. For those who have not registered yet, we recommend that you register and continue booking your travel needs to ensure your space is reserved. Many airlines are offering deals for newly booked flights, where changes or cancellations can be made within a specific timeline.

If the Annual SMA Conference does get cancelled later, will I get a refund on my registration, travel, and accommodations?

In the event of a cancellation of the 2020 Annual SMA Conference:

  • All Cure SMA registration fees will remain fully refundable.
  • Hotel reservations within the Cure SMA hotel room blocks can be cancelled up to six (6) days prior to the arrival date to receive a refund of the deposit.
  • Many airlines are now offering no change fees on booking new travel (please look at each airline policy closely to see what applies for you).
  • Cure SMA will work to support and cover non-refundable expenses that registrants may incur as a result of a Conference cancellation.

If you have any questions related to the Annual SMA Conference, please reach out to [email protected].

Information and Recommendations on COVID-19

The SMA community’s concern has been rising as cases of COVID-19 increase in the U.S., primarily in urban areas. While discussions continue around future Cure SMA events, we would like to share some information on the disease and prevention measures for your easy reference.

What We Know:

According to the Centers for Disease Control and Prevention (CDC), the immediate risk of exposure to the COVID-19 is thought to be low. However, in places where ongoing community spread has been reported, people are at elevated risk of exposure.

  • The virus is spread by respiratory droplets produced when an infected person coughs or sneezes. These droplets can land in the eyes, noses, or mouths of people who are nearby, or even be inhaled into the lungs.
  • People are thought to be most contagious when they are most symptomatic (i.e., the sickest) but can be contagious early in course of illness.
  • The elderly and adults with underlying health conditions are at increased risk for severe disease, while, to date, children seem to present with milder disease.
  • There is no approved treatment or vaccine for this virus.
  • Masks should be worn by those with respiratory symptoms and may be helpful to control spread of infection. Wearing masks by healthy people is not recommended. Masks are necessary for the protection of healthcare providers.
  • Typical symptoms may appear 2 to 14 days after exposure, presenting as fever, cough, and shortness of breath.

Protecting Yourself and Your Family:

The best way to protect against respiratory illness, including COVID-19, is to continue to practice good health habits.

  • Stay calm. Concern about a novel virus infection outbreak can lead to fear and anxiety. Health professionals, and we at Cure SMA, are here to help alleviate these fears.
  • Avoid others who are sick.
  • Frequently wash hands with soap and water for at least 20 seconds or use alcohol-based hand sanitizer with at least 60% alcohol base.
  • Avoid touching eyes, nose, and mouth.
  • Cover coughs and sneezes.
  • Disinfect surfaces regularly.
  • If traveling by air, wipe down all surfaces in the plane with antibacterial wipes designed for surfaces. The key is allowing the surface to air dry following wiping the surface with an antibacterial wipe.
  • Avoid shaking hands, hugging, and kissing.
  • Avoid large gatherings.
  • Avoid travel to high risk locations.
  • If you become ill, stay home, call your doctor’s office to discuss symptoms, and try to stay out of healthcare facilities.

Questions on COVID-19

Is the SMA community at a higher risk for contracting COVID-19?

The elderly and adults with underlying health conditions are at the greatest risk for severe disease. While children seem to have milder disease, it is not known whether children with underlying health conditions, such as SMA, are at increased risk for severe disease. However, in general, anyone with SMA is at increased risk for more severe disease due to the general increased fatigue associated with viral illness.

If you have questions about SMA treatment decisions or needs, contact your healthcare provider and/or care team. They can advise on the safety of local healthcare facilities and if changes to your treatment timelines are warranted. For scheduled appointments and treatments, you may consider asking to be placed in a room upon arrival to avoid sitting in the waiting room.

Should I take my child out of school?

Please discuss your concerns about exposure to COVID-19 with your school administrators. Alternatives to attending school in person may be available, including virtual or e-learning classrooms. Your school can advise about the education options available under these circumstances.

This is a rapidly evolving situation and we recommend that the SMA community follow the guidance of the CDC. If you have any specific personal medical questions related to the COVID-19, please contact your healthcare provider.


Kenneth Hobby

President, Cure SMA

Mary Schroth, M.D.

Chief Medical Officer, Cure SMA

Jill Jarecki, Ph.D.

Chief Scientific Officer, Cure SMA

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