July 13, 2021
Covid-19 Research Database
The COVID-19 Research Database is a secure repository of HIPAA-compliant, de-identified and limited patient-level data sets, which has been made available to public health and policy researchers to further their investigations of the direct and indirect effects of the COVID-19 pandemic on population health and economics. Research teams using the database have published their insights in numerous peer-reviewed journals and have been covered in major national media outlets. Their work has contributed to thought leadership on the safety of school reopenings, the impact of the pandemic on chronic care, the decline in preventive care and much more. The resource is available at no cost to non-commercial researchers. It contains over 85 billion records covering over 250 million unique individuals. Records include de-identified EHR, claims, consumer data and more. For more information and to get started, please register at the site to access the Researcher Hub.
March 31, 2021
MDA Access Survey
If you are living with a neuromuscular disease, or caring for someone who is, you are invited to take part in the 2021 MDA Access Survey. This survey will address some of the common barriers the neuromuscular disease community faces, such as access to equipment, therapies, education, employment, and financial independence.
Participation in this survey will help inform MDA’s Access and Education Programs and future advocacy initiatives. Take the survey today and provide valuable insight into access barriers within the community. Survey closes May 15th, 2021.
Complete the survey here: https://mda.qualtrics.com/jfe/form/SV_6JWOHHenQKuc9Yq
December 18, 2020
Covid-19 and Planning for Functional Needs for People with Disabilities
Speaker: Quintana Stewart, MPA. Health Director Orange County Health Department
When and where: 1pm on April 30, 2021. Online on Zoom.
To Register: Email email@example.com
Leave your name, email address, and phone number
December 2, 2020
Watch MDA's #GivingTuesday year in review Facebook Live event moderated by MDA Chief Scientific Officer Dr. Sharon Hesterlee, featuring MDA Chief Medical Advisor Dr. Barry Byrne with MDA Board Member Dr. Elizabeth McNally.
MDA’s #GivingTuesday year in review Facebook Live event moderated by MDA Chief Scientific Officer Dr. Sharon Hesterlee, featured MDA Chief Medical Advisor Dr. Barry Byrne with MDA Board Member Dr. Elizabeth McNally. This event covered a year-in-review of how we keep #research and #clinicaltrials moving forward, the state of treatments for the #neuromuscular community, the COVID-19 vaccine and more! Thank you to our event sponsors Mitsubishi Tanabe Pharma America, Inc., Sanofi Genzyme, and Genentech. Donate to fund research, care and advocacy at mda.org.
November 12, 2020
The Muscular Dystrophy Association (MDA) invites you to join a special virtual conversation in National Caregivers Month with Sarah Stoney, MSW, LSW from MDA’s Care Center at The Children’s Hospital of Philadelphia, for a special Facebook Live on caregiving for the neuromuscular community on Thursday, November 12 at 3pm ET. The discussion features caregivers Prow Sarnsethsiri, mother of alumni MDA National Ambassador and student at Worcester Polytechnic Institute, Justin Moy who lives with CMD; and Douglas Tatum, business owner and his wife Leticia Tatum, a VP of Human Resources who lives with SMA.
October 14, 2020
October 13, 2020
We want to know your experience.
You are invited to participate in the following study:
COVID-19 and Mental Health in Adults in Puerto Rico: Determining Social and Personal Factors
To be eligible you have to be:
- 21 years of age
- Living in Puerto Rico for at least 3 months
- Understand Spanish
Eduardo Cumba Avilés, Ph.D.
Ernesto Rosario-Hernándes, Ph.D.
Orlando Pagán-Torres, B.A.
For more information please contact Dr. Eduado Cumba Avilés, 787-310-9686 or Eduardo.firstname.lastname@example.org
September 17, 2020
September 10, 2020
July 31, 2020
July 24, 2020
July 13, 2020
Changes to the IHSS Program Due to the COVID-19 Public Health Emergency
- Program Transistions available via Zoom and additional details in Appendix D of the IHSS Advocate Manual
DUCHENNE FAMILIES - Help is available for EMERGENCY NEEDS and FAMILY FUN! Coronavirus seems to have turned the whole world upside down. Whether you’re struggling with job loss, the worry about isolating but still getting groceries, figuring out how to keep your kids busy, or all of the above, these are unusual times! That’s why the Duchenne Family Assistance Program is launching the Coronavirus Relief Fund for Duchenne families. Here’s how it works:
*Go to www.duchennefap.org and click “apply for help” at the top of the page
* Fill out steps 1-3
* In step 4, choose “Coronavirus Relief” and then select $250 or $500. These mini-grants are available for groceries (and delivery fees!), utilities, or any other emergency needs you’re struggling with. Please tell us how you plan to use the funds and if there are other ways you need help.
* Also in step 4, you can choose “Family Fun Fund” to request a $100 mini-grant per child so you can purchase fun or educational materials for your DMD child(ren) AND SIBLINGS!! All you have to do is select the number of kids in your Duchenne household, and then start planning some fun...puzzles, games, a new hobby, music or whatever works for your child(ren)!
June 15, 2020
May 22, 2020
MDA Engage: Caring for oneself with ALS during COVID-19 - On-demand Webinar
MDA alongside Dr. Ambereen Mehta and Hillary Zebberman, MSW, LCSW, from UCLA Health in Los Angeles, CA, are the hosts of this on-demand webinar for Amyotrophic Lateral Sclerosis (ALS) families and caregivers to learn about how to care for yourself during this time of uncertainty with COVID-19. Topics explored during this webinar include an overview of the medical considerations around ALS and COVID-19, working through stress and anxiety, creating new norms, caregiver resources, and adapting to a world with social distancing.
NIH’s Rare Disease Survey
Rare disease patients and caregivers: How are you being impacted by the novel coronavirus pandemic? Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community. Complete the survey or learn more.
May 19, 2020
Coronavirus 2019 Information
This video presents an easy-to-understand overview of COVID-19 - what it is, how it spreads, and why an infection with this virus can become so serious.
May 14, 2020
See the results of Community Survey on Covid-19
Thank you to the community for lending your voice to MDA’s Community Survey on COVID-19. Over 1,900 people participated and provided valuable insight into the needs of the neuromuscular community during this time of COVID-19. We are happy to share back with you the highlights from the survey. These results are helping MDA as we work to support gaps in information and needs.
May 1, 2020
Questions on COVID-19? Email ResourceCenter@mdausa.org
April 20, 2020
April 13, 2020
Survey is now closed
MDA is here for you and we want to hear from you directly to prioritize what you and your caregivers need during the coronavirus pandemic. Please take a few minutes to tell us what you need so we can bring you the most relevant and timely support as we get through this together.
Complete the survey by April 22nd
April 8, 2020
April 3, 2020
March 26, 2020
MDA Summer Camp Update
After careful review of the growing seriousness and community spread of the coronavirus (COVID-19), and discussion with trusted medical professionals and organizations, MDA has made the difficult decision to cancel all summer camp programs in 2020. Our top priority is the health and safety of our campers, volunteers and staff. We know that our campers, volunteers, sponsors, and MDA staff look forward to these life-changing weeks at camp every year, and this decision was not made lightly. More information about virtual opportunities to connect with the MDA community will be available soon.
March 9, 2020
MDA Conference Update
After consulting with our physician experts, community leaders, participating panelists, attendees, meeting sponsors, and vendors, we have decided to postpone our 2020 MDA Clinical & Scientific Conference scheduled for March 22–25, 2020, at the Walt Disney World Dolphin Resort in Orlando, Florida, due to concerns over the Coronavirus. Please stay tuned for further updates.