HOPE FOR JAVIER’S BOLD NEW INITIATIVE:

TO TRANSFORM HEALTHCARE IN THE TRI-STATE AREA

Studies have proven that access to multidisciplinary care adds on average TEN YEARS to DMD boys’ life expectancy.

The care landscape has advanced dramatically in the past 35 years – but not all advances impact equally.  Hope for Javier is working to change that.  

Hope for Javier has partnered with STONY BROOK CHILDREN’S HOSPITAL to create a comprehensive care model for this patient population.  

Here’s what success looks like to us:

First DMD center of excellence in tri-state area

Drive neuromuscular research in NY by creating a registry of eligible clinical trial participants in a dense patient population 

Equitable access to clinical trials

Equity in health outcomes across economic, geographic, racial and ethnic groups 

Comprehensive disease management strategies & intensive case management 

TEN
MORE
YEARS

THE CARE TEAM

A coordinated multidisciplinary approach to care allows many specialists to give input into the best and most appropriate care for each Duchenne patient.  This would include access to the following providers at each visit (at the same facility, during the same multi-day or single-day visit):

  • Clinic coordinator (a nurse / nurse practitioner)
  • Neurologist with expertise in neuromuscular care
  • Cardiology
  • Pulmonary
  • Genetic counseling
  • Physical therapy
  • Social work

Sub-Specialty Services

The following sub-specialty and clinical services would be available as needed to see patients (at the same facility, during the same multi-day or single-day visit):

  • Gastroenterology
  • Nutrition
  • Orthopedics
  • Orthotics
  • Endocrinology
  • Occupational therapy
  • Palliative care
  • Neuropsychology
  • Surgery
  • Speech therapy
  • Durable medical equipment (DME)
  • Wheelchair specialist

WHERE WE COME IN

While Stony Brook Children’s Hospital can bring all of the necessary medical services to the bedside, it’s the non-billable services that are crucial to creating comprehensive disease management.  Sibsidizing those costs is where we come in.

Clinic Coordination: a care coordinator is the point of contact for healthcare to ensure patient needs for healthcare services are met, as well as that information sharing occurs across all providers and their patients.

Social Worker: a well trained social worker is an integral part of the multidisciplinary care team.  Social workers help families adjust to a diagnosis of Duchenne, find needed services, as well as engage with school staff around modifications.  Social workers connect families with services that ease the financial stresses of raising a child with a disability so that they can focus on the important things in life, such as caring for and enjoying time with their children.

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