At CureDuchenne we understand that when families are affected by a disease with no cure such as Duchenne muscular dystrophy, finding a sense of community is important. We are pleased to introduce our new CureDuchenne website, which is focused on strengthening the Duchenne community and connecting families to the best resources available.
Our updated website allows viewers to find Duchenne-related resources ranging from research overviews to family stories. The new website was designed to serve as an information hub for new and previous visitors alike, including details on free upcoming CureDuchenne Cares workshops; clinical trial information; fact sheets and infographics about Duchenne; details on exon skipping; Duchenne care topics such as physical therapy, and more.
CureDuchenne.org is divided into three main categories: Cure, Care, and Community. Since day one, our goal has been to find a cure for Duchenne, and visitors can now track our progress, specifically through the CureDuchenne Ventures section, and join us in the fight for a cure. With limited treatment options for Duchenne patients, the ‘care’ section on our website provides a vital education resource for parents, caregivers and clinicians in order to help ensure loved ones have the best care available. With the website redesign, we aim to bring together families, caregivers and medical professionals to share experiences, advice, and personal stories that give hope and support to the entire community.
The website comes at a pivotal time in continuing our progress towards finding a cure. This past year has been a victorious one in many ways, with the approval of the first ever drug to treat Duchenne; though Exondys51 is only effective for 13% of the Duchenne population, it’s a big step in the right direction. Another drug EMFLAZA, a steroid, was also approved for all boys with Duchenne.
By providing a one-stop-shop for all things Duchenne-related, the new website brings together families, clinicians, supporters, and more to better connect the Duchenne community as we support one another and join together to find a cure.
Become a CureDuchenne Champion:
Share your story
Start a personal fundraiser
Attend an event or workshop
Contact Kylee Groon, CureDuchenne’s Community Engagement Manager, at Kylee@cureduchenne.org for more ways to get involved.