About the program

How the program works

When Mallinckrodt Pharmaceuticals decided to conclude the VTS301 Part C trial and other active clinical studies, they offer patients the opportunity to transition to an Expanded Access Program (EAP). The EAP will be available to all investigators currently participating in active clinical studies and will provide access to the treatment for the foreseeable future.

Though NPC families in the trial will be able to still access Adrabetadex through the EAP, the costs of travel expenses will no longer be covered because the trial is ending. Therefore, the Parseghian Fund has set up a program to support the costs of travel.

The program will run until December of 2023

Funding will be used to support the families transitioning from the Adrabetadex Clinical trial to an Expanded Access Program only.  NPC families will be able to apply for travel awards to cover travel costs. Support may be used for the following travel costs:

  • Airfare (Coach only plane tickets**)
  • Vehicle mileage (based on the rates by IRS.gov), taxi and tolls
  • Hotel/room Accommodations

*No funds will be used to support food or beverage.

**Flights will only be covered for up to two parents (or caregivers) and the patient.  Cost will not be covered for siblings and additional relatives/friends.

***International travel reimbursements will be considered on a case by case need

Frequently Asked Questions

To seek reimbursement, families will submit the required form to the Ara Parseghian Medical Research Fund at Notre Dame within 6 months of travel, not to exceed one submission every 3 months.

Applications will include a brief summary of each trip as well as photocopies of each receipt.

Once expenses are verified by the APMRF, reimbursements will be sent to each NPC family.

Start your submission

To begin the submission process please go to the google doc in the below link:
Click here to start your expenses submission


For any questions about the program, please contact Jamie Boling at 574-631-4651 or jboling1@nd.edu 

Support was provided by Mallinckrodt Pharmaceuticals