As we navigate these uncertain times, the ASF will provide as much information as possible regarding COVID-19 and Angelman syndrome. If you have specific questions or need assistance, contact info@angelman.org or call our office at 1-800-432-6435.
Resources and Information
WEBINAR: Communication Support
During this time at home, we are trying to be the experts for our individuals with AS and it can be overwhelming. this webinar shares tips, advice and reminders about communication, working with speech therapists, services through IEPs and more.
See the presentation slides | Watch Shelly Moore’s Explaining COVID
Closing the Gap Offers Free and Discounted Resources
Epilepsy Foundation of America Facebook Live
On March 18, the Epilepsy Foundation hosted a Facebook live discussion about COVID-19 and epilepsy. (the recorded session is on a public page, so you do not need to follow the organization or have a Facebook account to view.)
WEBINAR: COVID-19 and Angelman syndrome
On Thursday, March 26, clinicians from the 15Q Clincial Research Network discussed Angelman and COVID-19.
2020 ASF Walk is Postponed to September
See the announcement for details and information.
News and Articles:
Tips for Staying at Home
Ideas and information for those caring for individuals with AS while sheltering in place.
Also included Dr. Jane Summers discusses challenging behaviors [segment from COVID-19 webinar].
Coronavirus FAQs
A news article from March 13 with common questions about the virus and how it pertains to AS, with answers from 15Q Clinical Research Network clinicians.
Updates on Clinical Trials and Research Studies
Update from Ovid regarding Phase 3 NEPTUNE and Open-Label ELARA studies.
Summary: Clinical trials are continuing. Communication with your study site is imperative for guidance on upcoming visits, procedures and any concerns. If you cannot reach your study site, contact clinicaltrials@ovidrx.com.
Summary: Ionis continues to move toward beginning Phase 1 clinical trial in the fall. Patient safely as well as clinical site employee safety is a priority.
Update from Roche/Genentech on FREESIAS
Summary: Home-based study activites continue. Site and home visits are currently paused.
Scott Stromatt, M.D., CMO of GeneTx Biotherapeutics provided the following update:
“The first group of patients in the clinical trial of GTX-102 have received their first dose. The clinical trial is proceeding as planned and we are closely monitoring the COVID-19 pandemic and how it might impact this clinical study. Patient safety is paramount and we are making adjustments as necessary to continue the required monitoring while reducing the burden to families where possible. . . . The pandemic has slowed down the site activation process as each institution is addressing the COVID-19 pandemic in their region.”
March 30: Update from Wen Hann-Tan regarding the Angelman Natural History Study
Summary: In person research visits are suspended. Natural History Study activities continue with questionnaires and assessments that can be done via phone, Skype or other means.