2020 DSF Patient Assistance Grant Program

As our community well knows, living with Dravet syndrome has significant direct and indirect costs for the patient’s family. In a 2018 publication it was found that the average total annual financial burden for a family with a child with Dravet syndrome was $106,378. These costs included direct costs, such as hospitilizations and in-home medical care visits. Additionally the time required to provide care for the individual with Dravet syndrome often prevented the parent from working, which translated to indirect costs.

DSF has long recognized this financial burden and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue to obtain some of the needs of patients that are not covered through commercial insurance or medicaid. Starting each year on March 1st, the DSF PAG program accepts applications for medical equipment, therapy devices, and educational tools. The program runs through December 1st each year or until allocated funds for that cycle are depleted. Caregivers of patients worldwide are eligible to apply for needed equipment and devices of up to $1,500 per year, with a lifetime cap per patient of $5,000. Of important note, the program is need-based, not income-based.

Some of the items that have been awarded through the program include:

  • Adaptive strollers/wheelchairs
  • Cooling vests
  • Standers
  • Seizure helmets
  • Seizure monitors
  • Sleep-safe pillows
  • Educational devices, such as iPads
  • Communication devices
  • Tools and supplies associated with the keto diet

The program does not cover medical co-pays, therapy costs, respite assistance, or service animals. You can view the full program requirements and access the online application on our website. Since our inception, we have awarded over $160,000 in grants to families in need.

We all know from experience how hard it is to ask for help, even when you really need it. We hope that the DSF PAG program can help you obtain some of the items that will make it easier to care for your loved one with Dravet syndrome and keep them safe.