Dravet Syndrome Foundation (DSF) has developed and offers a variety of programs that serve the needs of our patients and professionals. Two of the programs that are particularly valuable to our patient community are our Patient Assistance Grant Program and our Disaster Relief & Recovery Fund.

DSF Patient Assistance Grant (PAG) Program

As our patient families know, living with Dravet syndrome (DS) imposes significant medical costs. Our PAG program was designed to help families obtain necessary equipment and tools that are not covered by insurance. DSF sets funds aside each year to offer grants to the DS community for medical equipment, therapy devices, and educational tools. The PAG program is open to patients worldwide who meet the requirements. It opens each year on March 1 and closes on December 1, or when the funds for that year are depleted. Of important note, the program is need-based, not income-based.

Patients can apply for equipment and devices of up to $1,500 through a single application each year, with a lifetime program cap per patient of $5,000. Some of the items that have been eligible for coverage in the past through this program include:

  • Adaptive strollers/wheelchairs
  • Cooling vests
  • Standers
  • Seizure helmets
  • Seizure monitors
  • Sleep-safe pillows
  • Communication devices, such as iPads
  • 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.

DSF Disaster Relief & Recovery Fund

Our Disaster Relief and Recovery Fund was established through a generous grant in 2017 for patients with DS in the United States that have been impacted by a natural disaster event. When a family is forced to evacuate, they may only have enough time to grab a few personal belongings, and shelters typically lack necessary equipment for those with disabilities.

This program is in place to help alleviate some of the immediate needs that result when a natural disaster occurs. Families have used the funds in time of need for temporary lodging, food, or to replace items lost in the disaster, such as clothing or personal items. Applicants must be members of the DSF Family Network and may apply for either a $500 Visa card or Amazon E-card to be used however needed by the families. Full details on the program and the application may be found on our website.  

Even if you don’t have an immediate need that would be serviced by either of these programs, I would encourage you to take the time to learn about them so you have the knowledge available if and when you do need it. Any questions may be directed to Jamie, who oversees both programs.