CureDuchenne, the nation’s leading nonprofit funding scientific research and innovation for Duchenne muscular dystrophy, announced today it has entered into a three-year partnership with Baebies. As a result of CureDuchenne’s investment and partnership, Baebies will add Duchenne muscular dystrophy, the most common and lethal form of muscular dystrophy that primarily affects young boys, to its expanded newborn screening service. CureDuchenne’s partnership with Baebies, along with the large National Institutes of Health SBIR grant awarded to the organization earlier this year, will significantly advance the identification of newborns with Duchenne muscular dystrophy.
The ability to identify Duchenne-affected newborns within the first few weeks of life will empower parents to enroll their children in suitable clinical trials and start treatment as early as possible. It will also help the community to better understand the incidence of Duchenne and learn more about early symptoms of the disease. Additionally, access to this kind of screening can provide a clearer understanding of phenotype and genotype linking that will benefit a much larger population.
“CureDuchenne’s business model is to accelerate programs, such as newborn screening, that will benefit the Duchenne community. Newborn screening allows for early diagnosis which is incredibly beneficial for patients and their families to initiate treatment as soon as clinically recommended. This can lead to better health outcomes for patients and avoidance of lengthy diagnostic odysseys, which delay crucial treatment,” said Debra Miller, founder and CEO of CureDuchenne.
Miller adds, “Our mission is to address the whole journey of a Duchenne patient, from community to physical therapy to clinical trials. Adding Duchenne newborn screening is a natural next step for us and we are excited about the benefits our partnership with Baebies will deliver to new parents and the Duchenne community.”
“It is partnerships with organizations like CureDuchenne that will help us make the greatest possible impact. With a shared mission, this partnership will enable us to find these babies when they’re born and get them started on the treatment they need as soon as possible,” said Richard West, co-founder and CEO of Baebies.
Baebies is the first of a series of strategic investments and partnerships that CureDuchenne will be announcing. To date, the organization has leveraged more than $1.3 billion in follow-on investment from venture capital, biotech and pharmaceutical companies to fund research and other initiatives to help positively impact the entire continuum of care associated with Duchenne muscular dystrophy.
CureDuchenne breaks the traditional mold of philanthropy by investing fundraising dollars into organizations with a shared mission or the potential to make a positive impact for the Duchenne community. On October 11, the company will announce its end of year fundraising campaign designed to raise awareness and funds which can be redeployed through strategic investments in 2019.