COVID-19 Message for the Rett Community

COVID-19 Message for the Rett Community

Categories: Blog, Homepage, News

6.25.20 COVID-19 Community Update

As many states begin to re-open, we want to share the following message containing the re-opening status of the U.S. Rett Clinics and guidance from’s Medical Advisor on returning to therapies and schools.

Rett Clinic Re-opening Status

The following information summarizes U.S. clinics’ re-opening status for clinical care of Rett syndrome and research and clinical trial visits. This information was reported on June 19, 2020. Given regional differences and changing circumstances around the country, please contact your Rett clinic for updates and helpful information prior to making plans to travel. will update this information monthly.

Clinic Re-Opened for Clinical Care for Rett (or Anticipated Re-Opening) In-Person Visits, Virtual/Telehealth Visits, or Both Re-Opened for Research/Trial Visits
Rett Clinic and Research Center, University of Alabama Yes Both in-person and virtual visits Yes
Katie’s Clinic for Rett Syndrome and Related Disorders,
UCSF Benioff Children’s Hospital Oakland
Yes Virtual/Telehealth Visits Only Yes
USC UCEDD Rett Syndrome Clinic, Children’s Hospital Los Angeles July/August 2020 July/August 2020
Rady Children’s Hospital Yes Both in-person and virtual visits Yes
Rett Clinic of Children’s Hospital Colorado Yes Virtual/Telehealth visits only July 2020
Center for Rare Neurological Diseases Yes Both in-person and virtual visits Yes
Rush University Medical Center Yes Both in-person and virtual visits Yes
Kennedy Krieger Institute Yes Virtual/Telehealth Visits Only Unknown
Rett Syndrome Program, Children’s Hospital Boston Yes Virtual/Telehealth Visits Only Yes
Rett Syndrome Services, Gillette Children’s Hospital Yes Both in-person and virtual visits Yes
New York
Tri-State Rett Syndrome Center, Children’s Hospital at Montefiore Yes Both in-person and virtual visits July 2020, Telehealth Only
University of Rochester Medical Center Yes Both in-person and virtual visits Yes
Rett Syndrome and Related Spectrum Disorders Clinic, St. Louis Children’s Hospital Yes Both in-person and virtual visits July 2020
Rett Syndrome Clinic, Cincinnati Children’s Hospital Medical Center Yes Both in-person and virtual visits Yes
Child Development and Rehabilitation Center, Oregon Health and Sciences University Yes Both in-person and virtual visits N/A
Buerger Center for Advanced Pediatric Care, Children’s Hospital of Philadelphia Yes Both in-person and virtual visits End of June 2020
South Carolina
Greenwood Genetic Center Yes Both in-person and virtual visits Yes (follow-up only; new enrollment anticipated in September 2020)
Vanderbilt University Medical Center Yes Both in-person and virtual visits Yes
The Blue Bird Circle Rett Center, Texas Children’s Hospital Yes Both in-person and virtual visits Yes


Message from Dr. Tim Benke, Medical Advisor

We have not had any official reports of COVID-19 infections in the developmental encephalopathies (DE) (Rett Syndrome, MDS, CDD, FOXG1, etc.) community. While we continue to remain vigilant and concerned (see Messages below), so far, those few anecdotal reports we are aware of did not include the need for ICU care.

Our next big challenge is to navigate the return to therapies and school. The incredibly great importance of re-engaging therapies and education is balanced with the equally great need for the safety of our children with DE and their teachers, therapists, and support staff. The American Academy of Pediatrics has made some suggestions: These suggestions recognize that each community will have different factors and solutions in their approach to addressing the need of returning to school and therapies. In a nutshell, we all need to practice frequent hand-washing and mask-wearing to protect the entire community. A safe return to school requires flu vaccinations (and COVID vaccination) for all children and families when available.

  • Families should be working with their health care providers now to ensure that vaccinations are up to date.
  • Families should be contacting their school and therapists now to determine how to safely return this fall (or sooner).
  • Ensuring that your child’s Individualized Educational Program (IEP) is up-to-date now is essential. If you think modifications are needed, now is the time to pursue that. Families should remember that these requests for schools need to be provided to the school, signed and dated, in written hard-copy (not email).

Remember, if your child needs medical attention, get it (see Messages below).
Stay safe out there. We miss you and look forward to seeing you soon.

5.15.20 COVID-19 Community Update

After months under stay-at-home orders, many states are beginning to reopen. As these changes take place, we wanted to share the following message containing guidance from’s Medical Advisor:

Message from Dr. Tim Benke, Medical Advisor

In general, patients with developmental encephalopathies (DE) (Rett syndrome, MDS, CDD, FOXG1, etc.) might not do well with COVID-19. Should they become really sick with COVID-19, they could need ICU care. This care might include a ventilator and would likely involve treatment by providers not familiar with a patient’s DE. These providers may make unsupported assumptions about their DE, including life expectancy and quality of life.

The goal is to prevent patients with DE from getting sick if at all possible. 

Consider gauging the risk of a DE patient getting COVID-19 in comparison to influenza:

-There is an influenza vaccine. We think all DE patients should have this.
-While there is an influenza vaccine, it’s not fully effective. Nevertheless, there is some degree of “herd immunity” due to the influenza vaccine.
-COVID-19 appears to be both more infectious and more deadly in adults.
-If a DE patient contracts influenza, there is an expectation that they will be treated. Treatment includes an environment where standard treatments (rapid testing, ICU care, personal protective equipment, and ventilators) are fully available.
-Even in the influenza season, we want our patients to be as active in the community as possible.
-Parents weigh all these risks during the influenza season.

Together, parents and providers weigh these risks when considering these scenarios:
-when to go out of the home for doctor visits
-when to go out of the home to participate in clinical trials
-when to send their children to school and therapy

Accessing healthcare while protecting your family member with DE

Most health care facilities will have necessary safeguards in place for COVID-19 (screening team members, rapid testing, personal protective equipment), making them as safe as possible.  This is important, as we do not want families to avoid accessing healthcare when necessary, especially for treatable illnesses or even pneumonia from other causes (such as aspiration).  School and therapy situations will vary and should be forthcoming with their safeguards so you can make decisions about when it is appropriate to resume in-person services.

COVID-19 may be with us for the near future. Patient safety is always of the utmost importance. Thus, telehealth should be the most common type of outpatient visit. For some clinical trials, telehealth may not be possible. Some needed services will still require a live visit (if sick or for things like botox injections, etc.,). Please do not avoid in-person healthcare. Families should discuss with their care providers to figure out when in-person healthcare is essential.

When to expect the return to “normal”

When will this situation change back to “how it used to be”? This will change when we know that a standard treatment environment can be consistently assured. Discussion with your providers and staying informed about your community is very important to assess this. This standard treatment environment might be past the “second peak” after phased re-opening. Or it may not be until a COVID-19 vaccine is available. At some point, families will primarily weigh the risk of these activities, and it will be community dependent. Families and providers will each be weighing their situations and risk tolerances.

Until then, we encourage families to work with their providers in supporting their loved ones to the fullest extent possible.

3.31.20 COVID-19 Community Update

Coronavirus Disease 2019 (COVID-19) has forced many changes across the world. But we will not let it change our support for our community. Please know that you are all in our hearts and minds during this unprecedented time. We are still here for you.

Our Foundation is actively following the coronavirus situation. Like many, we are working remotely from our homes. Our team connects regularly via Zoom to discuss how we can meet our community’s needs during the COVID-19 outbreak. We know that you are concerned for your family’s health, welfare, and needs. We understand you may be particularly anxious about helping your loved one with Rett syndrome thrive despite the many difficulties presented by the spread of the coronavirus. Some of you have extenuating circumstances and may have questions after reading the national guidelines.  We suggest that you reach out to your child’s physician for assistance in those cases.

Please stay connected. Our team will continue to share important information affecting our community as soon as it becomes available. We want to make you aware of a few updates to medical care, our events, and resources available for you and your family.

Medical Care for Rett Syndrome

The health care industry has rapidly adopted new measures to care for those afflicted with COVID-19 while limiting the spread of the disease. We all must do our part to preserve the health of our community, especially its most vulnerable members. To that end, please see the below recent update on clinic visits and clinical trials from our medical advisor, Dr. Tim Benke (Director of the Rett Clinic at Colorado Children’s Hospital).

Message from Dr. Tim Benke, Medical Advisor

As the concern over the novel coronavirus (COVID-19) continues in our Rett, CDD, FOXG1, and MDS communities, with the situation changing daily, I want to remind you that staying up-to-date is the still the best remedy. The best resources for this are the CDC website, your local Children’s Hospital, and your primary care provider.

Clinic Visits and Clinical Trials

Regarding any appointment for clinic visits or clinical trials, please contact your provider. Most academic hospitals have curtailed routine visits with shifts to telehealth due to increased risk of community exposure and stay-at-home orders.  This shift may require rescheduling. Some clinical trial activities have been cancelled due to safety concerns, due to risk of COVID-19 exposure and related inability to obtain safety measures such as blood work and heart tests.  These actions are not taken lightly and are very difficult decisions made by your clinical trial specialists carefully weighing the risks of harm.  Clinical trial specialists are working closely with study sponsors to strongly encourage development of alterations of clinical trial protocols, where necessary, to allow re-entry of trial subjects when the situation improves.

Unless you are notified by your provider, please do not assume that clinic visits or clinical trial visits are cancelled. Both of these are considered medically necessary; contact your provider for questions or concerns.

There is no specific immune compromise for Rett Syndrome. There is immune dysfunction in MECP2 duplication patients. Due to low core tone, poor cough and airway clearance and abnormal breathing patterns there is concern that our patients are at high risk for not doing well if they get infected. There is high risk of contracting infection due to frequent hand mouthing. Strict social isolation is the only way of minimizing risk of infection at this time. When considering strict social isolation, families should balance their risk tolerance with their needs and local isolation orders. Please consider discussing with your providers.

Helpful CDC Links
Their FAQs regarding prevention and treatment: Events

Social distancing is key to slowing the spread of coronavirus, helping our health care system, and protecting the vulnerable in our community. Our Spring fundraising events have been postponed or are moving to virtual. We are monitoring the current COVID situation to determine if our San Diego RettGetAway and our Ed Day at Kennedy Krieger will be held as planned. We will provide the community with an update on those events by April 10.

Research-Based Resources to Support Your Family

We are also working hard to provide you with resources that equip your family to navigate the care of those with Rett who may be missing services and therapies during this challenging time. We are proud of our two-pronged mission to accelerate Rett syndrome research and family empowerment. And we are excited to announce the following research-based tools developed from our partnerships with researchers across the globe. Please check out our:

  • Facebook Live training sessions on at-home strategies and activities on physical therapy and communications.
  • Our new Rett Syndrome Communication Guidelines handbook containing 116 pages of strategies for helping your loved one reach their fullest communication potential. This handbook is the first of its kind to be based on research findings and was made possible by the contributions of over 650 experts and parents of children with Rett syndrome from around the world.
  • Recordings of our past RettEd webcasts that we have recently posted on our website
  • More resources to come!

A Final Note

We greatly value our community. Without you, we would not be able to do the work needed to achieve our Foundation’s mission. We very much appreciate any support you continue to give us during this time. We thank you for reading and working with us so we can all get through this together.

3.13.20 COVID-19 Community Update

Dear community,

We know that the rapid and recent spread of the novel coronavirus (COVID-19) has many of you understandably concerned for the welfare of your families. We hear you. And we are still here for you.

Our leadership team is actively monitoring the development of the coronavirus outbreak and updating our practices as needed to protect our community. We will walk with you through this outbreak and will help keep you informed of news and science-supported precautionary actions you can use to help keep your family safe and healthy.

To this end, please take note of the following:

  • We have reached out to our medical advisor, Dr. Tim Benke (Director of the Rett Clinic at Colorado Children’s Hospital) for specific advice for our community. Please read and begin following the recommendations in his message below as soon as possible.
  • Our soonest in-person educational event is planned for June 6th. We remain hopeful that the outbreak will have been resolved by that time and plan to continue our events as scheduled. We recommend that you continue to make plans to join us utilizing refundable/changeable ticket and reservation options. We will notify you as soon as possible of any changes to our event schedule.
  • The coronavirus can’t and won’t stop Rett syndrome education. We invite our community to use any time stuck at home to take advantage of our online library of educational webcasts covering a variety of important topics (scroll down to previous Retted webcasts).
  • Our community continues to welcome communication and connection. We are the ones in the best position to relate to and understand what you are going through. Please pick up the phone or get online to stay in touch with the friends within our community you have already made and use our connections resources to make new ones.

Thank you for reading and taking action. We value our community and we know that together, we can work to safeguard the health of all of our community members.

Melissa Kennedy
Executive Director

Medical Advice for the Rett Community

from Dr. Tim Benke, Medical Advisor

We know there is concern in our Rett, CDD, FOXG1, and MDS communities over the novel coronavirus (COVID-19). The situation is changing day-to-day; staying up-to-date is the best remedy. The best resources for this are the CDC website, your local Children’s Hospital, and your primary care provider.

Unless you are notified by your provider, please do not assume that clinic visits or clinical trial visits are cancelled. Both of these are considered medically necessary; contact your provider for questions or concerns.

Here are some of those links (accurate as of today, March 9):
Their FAQs regarding prevention and treatment:

Other suggestions related to our patients:

  1. Wash your hands and your patient’s hands several times daily
  2. Do not touch your face
  3. Caregivers should reduce or eliminate contact and self-isolate per CDC guidelines
  4. Wash surfaces, toys, devices and other items that are in contact with patients hands with disinfecting wipes several times daily
  5. Caregivers that touch items and surfaces that are in contact with patients hands should wash hands immediately before and after touching these surfaces; this includes wheelchairs
  6. School and therapy should continue unless in a highly endemic area where schools are closed, per CDC guidelines
  7. Mask guidelines: see CDC website
  8. Follow CDC guidelines about monitoring signs and symptoms of illness:
  9. Make sure you have up-to-date prescriptions with refills.

Event Updates & COVID-19 Contingency Announcement

Many non-essential meetings, events, conferences, sporting events, school field trips, leisure vacations and even some college/university classes that convene large numbers of people are being postponed around the world, including the U.S. Many employers are allowing and even encouraging employees to work from home when/where allowable.

At this point in time, all our Foundation’s education events happening in the Spring, Summer, and Fall 2020 are continuing as planned, with contingency planning to postpone any or all of these if needed:

  • Rett Ed Day in Baltimore, MD (June 6)
  • RettGetAway in San Diego (June 18-21)
  • Rett Ed Day in Vancouver, WA (Aug 15)
  • Rett Ed Day in Greenville, SC (Sept 19)
  • Rett Ed Day in Chicago, IL (Oct 10)

We encourage you to plan to join us, and book your travel plans with these recommendations:

  • Purchase a refundable ticket
  • Check with your travel insurance provider to make sure you have or add a “Cancel for Any Reason” (CFAR) policy (which may cover about 75% of your cost)
  • Several airlines — including American, Delta, Frontier, JetBlue and United — have been waiving change fees for flights purchased between certain dates. For example, United Airlines states “book any flight with us now through March 31, you can change it for free over the next 12 months – any ticket, any fare type, any destination.”

We are working in partnership with local clinics and volunteers monitor the situation. If you register for one of our events, we will notify you as early as possible if we need to postpone or cancel.