Coronavirus Disease 2019 (COVID-19) Updates

The LAM Foundation Statement on Masks & Social Distancing

Updated May 20, 2021

On May 16, 2021, the Centers for Disease Control and Prevention (CDC) released updated guidance for individuals who have been fully vaccinated (at least two weeks following the full course of your vaccination) against COVID-19. Read more to learn about the recommendations and how they may affect the LAM community.

Click here to learn more.


TSC/LAM Virtual Town Hall: COVID Vaccine Update

Updated April 27, 2021

This recording is presented by Peter Crino, MD, PhD, TSC Clinic Director at the University of Maryland Medical Center, Chair of the TS Alliance Board of Directors Nishant Gupta, MD, Scientific Director, Director of the LAM Clinic Network, Assistant Professor of Medicine, University of Cincinnati Medical Center. Drs. Crino and Gupta provided updates on COVID vaccines in the TSC and LAM communities.

Download the presentation here.


The LAM Foundation COVID-19 Vaccine Recommendations 

Updated March 5, 2021

Since our last vaccine update of December 2020, there have been some new developments in the field, chief among them being a rapidly expanding repertoire of vaccinations around the world. The following is an updated guide aimed at providing answers to some of the most commonly asked questions pertaining to COVID-19 vaccination. Although there are multiple different COVID-19 vaccines being used worldwide, the information provided is focused on the following four major vaccines: Pfizer/BioNTech, Moderna, Oxford/AstraZeneca, and Janssen. 

Click HERE to download the full PDF of The LAM Foundation COVID-19 Vaccine Statement. 


The LAM Foundation COVID-19 Recommendations and Community Questions & Answers

Updated March 5, 2021

The LAM Foundation is closely monitoring the rapidly evolving developments regarding the COVID-19 pandemic. As the United States and other countries around the world begin to take initial steps towards easing the stay-at-home restrictions, it is important to be aware of the continuing risk that COVID-19 poses to patients with chronic lung disease. LAM patients should continue to exercise caution and remain vigilant during this phase of responsible reopening.

Click here to visit the COVID-19 Community Questions & Answers webpage.

Click here to download a PDF of the LAM Foundation COVID-19 Recommendations and Community Questions & Answers.


Understanding COVID-19's Impact on Those with TSC & LAM

Updated November 30, 2020

In episode 18 of Tuberous Sclerosis Alliance's TSC Now, host Dan Klein talks to Nishant Gupta, MD, Associate Professor in the Division of Pulmonology, Critical Care and Sleep Medicine at the University of Cincinnati where he serves as the Director of the Interstitial and Rare Lung Disease Program.

They discuss what researchers and clinicians have learned so far about how COVID-19 impacts those with TSC and LAM, what potential future vaccines mean for those affected, and how individuals with TSC and LAM who have already contracted COVID-19, confirmed by testing, can participate in an important Natural History Database study to help us better understand the risk and severity of the virus.

Click here to listen to the full podcast. 


TSC/LAM Virtual Town Hall: Moving On From Shelter In Place

Updated May 28, 2020

The LAM Foundation and the Tuberous Sclerosis Alliance co-hosted the TSC/LAM Virtual Town: Moving On From Shelter In Place. This 1-hour online presentation featured the following speakers:

Living with COVID-19: Framing the Guidelines and What Individuals with TSC Need to Know to Manage Neurological Health During Phased Re-Opening

Peter Crino, MD, PhD, University of Maryland School of Medicine

What LAM Patients Need to Know to Minimize Risk During Phased Re-Opening

Frank McCormack, MD, University of Cincinnati College of Medicine

Managing Kidney-Related Aspects of TSC and LAM to Minimize Risk During Phased Re-Opening

John Bissler, MD, St. Jude Pediatrics Research Hospital & Le Bonheur Children’s Hospital

Click here to watch the TSC/LAM Virtual Town Hall.


Research Survey for Rare Disease Patients about Impacts of COVID-19

Updated May 12, 2020

Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families. Impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance the diagnosis and treatment of groups of rare diseases.

To complete the survey or learn more, visit the study page here. Questions? Email the study team at rd.covid19@cchmc.org.


NIH Update

Updated April 2, 2020

The NIH LAM team is teleworking but not seeing LAM patients at this time. The team is contacting the LAM patients individually. If you are in the NIH LAM protocols and have not heard from the team or have questions for the team, please contact them by phone (301) 496-3632. Dr. Moss, Mary Haughey, Pauline Barnes, and Tat'Yana Worthy will be monitoring the phone for messages. The Nurse Practitioners, Amanda Jones and Patricia Williams are available by email.

The NIH team can be reached by contacting (301) 496-3632.


COVID-19 Protecting Your Family - Dr. David Price

Updated April 2, 2020

Dr. David Price of Weill Cornell Medical Center in New York City shares information in a Zoom call on March 22 with family and friends on empowering and protecting families during the COVID-19 pandemic.

Click here to watch the entire Zoom video.


National Health Council - COVID-19 Relief Legislation

Updated March 26, 2020

The following legislative update has been provided by the National Health Council

Two rounds of relief legislation have been passed. To get an overview of the policies already in place, please see the one-page information sheet prepared on March 18. The debate over the third, and largest, stimulus package is still ongoing. Senate leadership introduced legislation, S. 3548 Coronavirus Aid, Relief, and Economic Security (CARES) Act. After negotiations with Democrats broke down, the bill failed two key procedural votes.

We rallied the patient community on a letter with more than 215 organizations, asking for inclusion of nonprofit organizations in business relief efforts and increasing charitable giving. Because of these efforts, nonprofits are included in the bill, and there is now significant momentum for improvement.

In response to our lobbying, Senators James Lankford (R-OK) and Jeanne Shaheen (D-NH) introduced an amendment to increase charitable giving by raising the above-the-line deduction threshold to $4000 for individuals and $8000 for married couples. The NHC and other nonprofit leaders were able to get more than 1,500 organizations to endorse the amendment and we understand this got the attention of the Senate and greatly increased the likelihood of its inclusion in a final package.

Read the entire COVID-19 legislative update here.


Centers for Medicare & Medicaid Services - O2 Certification Waiver Request

Updated March 25, 2020

In an ongoing attempt to continue to advocate for patient access to oxygen, The LAM Foundation is proud to be one of nine organizations issuing a letter requesting that the Center for Medicare & Medicaid Services (CMS) provide a waiver to modify the certification and recertification requirements for Home Use of Oxygen.

The following update has been provided by the Pulmonary Fibrosis Foundation

Certification and recertification for supplemental oxygen are significant problems for Medicare patients during the COVID-19 crisis due to the requirements for in-person testing. We are requesting a waiver for these requirements during the COVID-19 emergency. Patients with underlying medical conditions that require supplemental oxygen are extremely vulnerable during the COVID-19 pandemic. It is critical that patients who need oxygen at home receive this benefit without disruption. The LAM Foundation, along with 8 additional organizations, have recently requested that the Center for Medicare & Medicaid Services (CMS) provide a waiver to modify the certification and recertification requirements for Home Use of Oxygen during the COVID-19 emergency, at least through July 15, 2020.

Read the entire letter of waiver request here.


Mental Wellness Resources: The LAM Foundation Wellness Portal

Updated March 23, 2020

In these times, we could all use a reminder of the importance of staying mentally, emotionally, and psychologically well. The LAM Foundation Wellness Portal was created for this purpose—a place for LAM patients to access content and resources for mental wellness needs including video & MP3 series on mindfulness, movement, and meditation. Join Stacy Sims, a mind-body educator, and Dr. Sian Cotton, Director at the Center for Integrative Health and Wellness from the University of Cincinnati, as they lead you through these mindfulness exercises.

Click here to visit The LAM Foundation Wellness Portal.


TSC/LAM Virtual Town Hall: A COVID-19 Update

Updated March 20, 2020

Peter Crino, MD, PhD, University of Maryland School Aof Medicine, Frank McCormack, MD, University of Cincinnati School of Medicine, Darcy Krueger, MD, PhD, Cincinnati Children’s Hospital Medical Center, and John Bissler, MD, St. Jude Pediatrics Research Hospital share considerations for impact of COVID-19 on management of TSC and LAM. Additionally, Spanish subtitles are available by clicking settings on the video and selecting "Spanish (Latin America)" under Subtitles/CC.

Click here to watch the TSC/LAM Virtual Town Hall.


The LAM Foundation COVID-19 Recommendations

Updated March 18, 2020

The LAM Foundation is closely monitoring the rapidly evolving developments regarding COVID-19 and implications for the LAM community. The Medical and Scientific Advisory Board of The LAM Foundation has developed the following guidance recommendations.

Click here to download a PDF of The LAM Foundation COVID-19 Recommendations.


2020 International LAM Research Conference & LAMposium CANCELLED

Updated March 5, 2020

It is with deep regret that The LAM Foundation has made the decision to cancel the 2020 International LAM Research Conference and LAMposium in Cincinnati, Ohio, April 30 - May 3, due to the evolving worldwide COVID-19 outbreak.

Click here for more details regarding this decision and a list of Frequently Asked Questions.

 


Additional Resources:

American Thoracic Society Patient Information Sheet

The CDC: Coronavirus Disease 2019 (COVID-19)

Cystic Fibrosis Foundation

Tuberous Sclerosis Alliance

Johns Hopkins COVID-19 Global Cases Map