About Us

Facebook Live @MDAorg for November’s National Caregivers Month Caregiving for the Neuromuscular Community Hosted by Sarah Stoney, MSW, LSW Featuring Prow Sarnsethsiri, Leticia and Douglas Tatum Thursday, November 12 at 3pm ET

NEW YORK, NY – Wednesday, October 29, 2020

What:

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.

The discussion will include:

• The important role caregivers play in the neuromuscular community
• Tips for supporting your loved one
• Handling difficult care conversations
• MDA’s assistance for families who are navigating the personal care assistant (PCA) process
• Taking care of the caregiver, including stress management, respite preventing burn out
• COVID-19 impact on the caregivers and resources from MDA COVID-19 Response

MDA Frontline COVID-19 response continues, featuring a Q&A open to a global audience including clients and caregivers to families living with neuromuscular diseases. The conversation aims to provide answers and resources families urgently need in these uncertain times, as the neuromuscular community is among the highest at risk for COVID-19.

When:

Thursday, November 12 at 3pm ET

Where:

https://www.facebook.com/MDAOrg/

MDA will request questions from the community in forthcoming posts on the @MDAorg Facebook page.

Who:

Host/Moderator: Sarah Stoney, MSW, LSW, MDA Care Center at The Children’s Hospital of Philadelphia

Guests: Prow Sarnsethsiri, mother of Justin Moy who lives with CMD; Douglas Tatum, business owner and husband of Leticia Tatum, VP of Human Resources who lives with SMA.

Event sponsors: Mitsubishi Tanabe Pharma America, Inc., Sanofi Genzyme, Biogen

** Host and panelists are available for interview prior to, or following, Q&A**

• Sarah Stoney, MSW, LSW, graduated from West Chester University with a Master of Social Work in 2014, after she received her bachelor’s degree in the same discipline in 2006. She joined The Children’s Hospital of Philadelphia’s Division of Neurology in 2014. Previously, she worked in the emergency department of Penn Medicine’s Chester County Hospital and as a family counselor at The Lincoln Center for Family and Youth. At CHOP, she assists patients and their families navigate the complex medical system, advocates with families in their schools and throughout the community, and provides ongoing support to patients and families in the neuromuscular, leukodystrophy, and multiple sclerosis communities.
• Prow Sarnsethsiri – Mother of Alumni MDA National Ambassador, Justin Moy. Justin lives with congenital muscular dystrophy (CMD). Prow is an active member of the MDA community and family caregiver.
• Douglas and Leticia Tatum – Douglas and Leticia Tatum reside in the Birmingham suburb of Pleasant Grove in Alabama and recently celebrated their 5-year anniversary in May. Douglas is a caregiver and a business owner, specializing in home improvement and his wife Leticia serves as the VP of Human Resources for a local insurance company. Leticia lives with SMA Type II and was diagnosed at the age of two.

Why:

Caregivers are a vital part of the neuromuscular community. COVID-19 has added additional burdens to families. From the stress of deciding to allow outside personal care assistants (PCAs) in the home to coming up with plans should primary caregivers become infected, caregivers have a lot of additional pieces to juggle and worry about. Additionally, caregivers need to take time for themselves and COVID-19 has added additional barriers to that important self-care.

The neuromuscular disease community (including people with muscular dystrophy, CMD, SMA, Duchenne and related neuromuscular diseases, and ALS – are among the highest risk populations for COVID-19. They are also among the most overlooked. While precautions for cancer patients, older adults and those with conditions that affect respiratory health exist, there is a lack of information specific to people living with neuromuscular diseases and their caregivers. MDA continues to be on the frontlines serving this community with research, care, and advocacy for over 300,000 people in the United States.

About the Muscular Dystrophy Association

For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. MDA Advocacy supports equal access for our community, and each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA’s COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.