COVID-19 Message for the Rett Community

COVID-19 Message for the Rett Community

Categories: Blog, Homepage, News

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 webinars 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 webinars covering a variety of important topics (scroll down to previous Retted webinars).
  • 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.

Communications Guidelines Pop-up