About the program

How the program works

Mallinckrodt Pharmaceuticals has decided to conclude the VTS301 Part C trial and other active clinical studies, and 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, up to $4250 for 1 year/family.

The program will run for a period of 12 months (January 1, 2021 – December 31, 2021)

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 up to but no more than $4250. 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.


To seek reimbursement, families will submit a grant to the Ara Parseghian Medical Research Fund at Notre Dame twice/year. Once during the month of July, 2021 and again in January, 2022.

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 up to the $4250 for the year.

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

Contact


For any questions about the program, please contact Barbara Calhoun at 574-631-8831 or Barbara.Calhoun.8@nd.edu 

For questions related to receipt submission, please contact Cathlin Coughlan at (574) 631-4154 or Cathlin.Brien.4@nd.edu

Support was provided by Mallinckrodt Pharmaceuticals