Receiving a positive diagnosis for Duchenne muscular dystrophy is devastating for new parents. Likewise, learning about the rare disease and how to care for a child with Duchenne can be extremely overwhelming. CureDuchenne hopes to make the beginning stages of every family’s Duchenne journey easier and faster with a dedicated website created specifically to address the unique needs of newly diagnosed families so they can get the right help for their child as soon as possible. CureDuchenne’s “Newly Diagnosed” site can be found here: https://www.cureduchenne.org/newly-diagnosed/.
“When my son Hawken was diagnosed with Duchenne 17 years ago, there was little to no information available online or through our pediatrician. It took us months to identify clinicians who specialized in Duchenne and much longer to fully understand what would be in store for us as Hawken aged,” said Debra Miller, founder and CEO of CureDuchenne. “Our ‘Newly Diagnosed’ site will minimize the time and frustration for new parents and connect them with other parents who are further along in their journey for support, allowing families to get care early, which can make a big difference in the long-run.”
CureDuchenne’s Newly Diagnosed site takes caregivers through eight important first steps, including: what to do when a positive screen for Duchenne is received; learning about Duchenne; joining the DuchenneXchange; locating a genetic counselor and physical therapist; building a care team; identifying clinical trials; registering for free CureDuchenne Cares events to learn about best practices in care; and staying informed on developments in research, therapies and clinical trials.
CureDuchenne is the leading nonprofit dedicated to extending and improving the lives of 300,000 boys worldwide who have Duchenne muscular dystrophy, a degenerative disease with no known cure. CureDuchenne uses an entrepreneurial venture philanthropy model to fund impactful research and accelerate human clinical trials. Through its CureDuchenne Cares program, CureDuchenne provides confidence to families seeking valuable resources, trains physical therapists and other health professionals on new standards of care and provides hope, support and empowerment to the Duchenne community. For more information, please visit www.cureduchenne.org.