DSF has long recognized there is a significant financial burden, direct and indirect, for caring for a child or adult with Dravet syndrome. A 2018 publication 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 hospitalizations and in-home medical care visits. The time required to provide care for the individual with Dravet syndrome often prevented the parent from working, which translated to additional indirect costs.
Our Patient Assistance Grant (PAG) program has been a part of our programs since we were founded in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers the opportunity for parents to obtain some of the needed equipment for their loved ones that is not covered through their private insurance or medicaid.
The 2021 DSF PAG program cycle began on March 1st. We are currently accepting 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
- Adaptive bikes
- Cooling vests
- 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 $178,000 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. But, DSF is here to help! We hope that the DSF PAG program allows you to obtain some of the items that will make it easier to care for your loved one with Dravet syndrome and keep them safe. If you have any questions on the program, please email [email protected]