The diagnosis of a chronic disease or disability can be devastating news for an adult and even more so for a child. The diagnosis itself can place a family on an emotional, financial and physical roller coaster. Doctor appointments, treatments and therapies, and managing a child’s caregiving plan can be incredibly stressful.
Community Health Charities invited Gretchen Voglezang from MommyCast to be the guest host for a special Health Matters at Work® podcast series on caring for children with a chronic condition. Community Health Charities also asked three mothers of children with chronic conditions to share their experiences from a mother’s perspective. Cathy Kanefsky, representing Autism Speaks, is a mother of twin boys with autism. Ms. Kanefsky shares her journey of navigating autism during a time when very little was known about the condition. Deb Cumbo, representing the Muscular Dystrophy Association, talks about her family’s journey when her son was diagnosed with Duchenne muscular dystrophy at a very early age. Liz Smith, representing the Arthritis Foundation, raises awareness of the reality of juvenile arthritis as she talks about her daughter’s experience with the disease. All three of their stories are inspiring and provide hope.
Click here to watch this free video podcast. Learn where these mothers turned for help, and what advice they have for families facing a new diagnosis of a chronic disease or disability.
If your child were diagnosed with a debilitating disease, what would you do? How would you cope? For many families, facing these types of questions is unimaginable. For others, it is reality. In Part 2 of our MommyCast series hosted by Gretchen Vogelzang, we discuss the process of dealing with chronic disease and disability, from the first discussion with a doctor to learning how to navigate the healthcare system.
Our three mothers – Cathy Kanefsky (representing Autism Speaks), Deb Cumbo (representing the Muscular Dystrophy Association) and Liz Smith (representing the Arthritis Foundation) – return to provide further insight into their challenges and successes in facing the daily struggles of providing support, care and advocacy for their children. Join them for the second installment of our MommyCast series and learn about the pathway that led them from cope to hope.
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About Autism Speaks
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization. Autism Speaks is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks brings hope to all who deal with the hardships of this disorder. Autism Speaks also aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. To learn more or get connected, please visit www.autismspeaks.org.
About Muscular Dystrophy Association
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.
MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and support services, and far-reaching professional and public health education. With national headquarters in Tucson, Arizona, MDA has more than 200 offices across the country, sponsors some 200 hospital-affiliated clinics and supports more than 330 research projects around the world.
MDA supports more research on neuromuscular diseases than any other private-sector organization in the world. MDA scientists are in the forefront of gene therapy research and have uncovered the genetic defects responsible for several forms of muscular dystrophy, Charcot-Marie-Tooth disease, a form of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), childhood spinal muscular atrophy and several other neuromuscular conditions.
The Association's comprehensive services program includes diagnostic and follow-up medical consultations, flu shots, support groups, MDA summer camps for youngsters, a medical equipment program, assistance with equipment repairs and resource referral. Through its national advocacy program, MDA works to make life better for people with muscular dystrophy and related muscle diseases by providing representation in matters of public policy and research advancement, both nationally and internationally, and facilitating active involvement in these areas by the people it serves. To learn more or get connected, please visit www.mda.org.
About Arthritis Foundation
The Arthritis Foundation is the only national nonprofit organization that supports the more than 100 types of arthritis and related conditions. Founded in 1948, with headquarters in Atlanta, the Arthritis Foundation has multiple service points located throughout the country. The Arthritis Foundation is the largest private, nonprofit contributor to arthritis research in the world, funding more than $380 million in research grants since 1948. The foundation helps people take control of arthritis by providing public health education, pursuing public policy and legislation, and conducting evidence-based programs to improve the quality of life for those living with arthritis.
The Arthritis Foundation offers information and tools to help people live a better life with arthritis. Whether it’s advice from medical experts to specialized arthritis self-management or exercise classes, the Arthritis Foundation has your solution. For more information, please visit www.arthritis.org.