Phelan-McDermid Syndrome Foundation Offers Travel Assistance for Clinical Research Studies

Phelan-McDermid Syndrome Foundation Travel Program

This Phelan-McDermid Syndrome Foundation (PMSF) Travel Assistance Program is designed to assist patients and families with the cost of travel expenses associated with the DSC Natural History research study regarding a Phelan-McDermid syndrome diagnosis.

How does the program work?

Eligibility

● The patient or patient’s family must be a PMSF member. To join, please visit our membership page. Any questions regarding membership may be directed to travelprogram@pmsf.org.
● The patient or parent/guardian must complete a Referral Form and Terms & Conditions form, and follow the program requirements. Contact travelprogram@pmsf.org to request the forms.
● A new referral will be required for each annual visit and will be subject to the current policies.

Assistance Funds

Funds from this program will be allocated on a first come, first served basis by PMSF, to the extent that funding is available. Funds are not guaranteed by enrolling in the research study or submitting a referral. If you will not be able to pay for the expenses without travel assistance, it is highly recommended to wait to receive approval from PMSF before making travel arrangements.

The funding amount awarded to approved patients traveling is $1,200 for all methods of travel and to any DSC site. It is the responsibility of the patient or family to pay any residual amounts.

Reimbursement

When you make purchases for eligible expenses, you may be reimbursed by PMSF once we receive proof of payment. Once documents have been received and verified as eligible expenses, PMSF may reimburse via check or ACH direct deposit. All requests for reimbursement must have proof documentation submitted no later than 30 days after travel has taken place.

Program Policies

Program policies are subject to change at any time. Referrals are processed based on the policies in place at the time of referral.

What expenses are eligible for reimbursement?

Eligible expenses are for travel to and from the city and site of the research study only, and expenses
directly related to your stay. Total reimbursement is capped at $1,200 for all eligible
expenses.

  • Airfare, Amtrak, or mileage (for your own vehicle or rental car)
  • Airline-checked baggage fees (up to $60 per family)
  • Travel insurance (reimbursable even if trip is canceled due to a covered event)
  • Transportation (taxi, car rental, bus, or shuttle)
  • Lodging accommodations (one room) * 
  • Parking
  • Food and drinks (no alcohol- receipts must be itemized) **

Covered travelers include the person diagnosed with Phelan-McDermid syndrome and up to two caregivers. Expenses for siblings may be covered on an as-needed basis; please contact travelprogram@pmsf.org to discuss.

Reimbursement is limited to up to one day of travel before the appointment, the day(s) of the research appointment(s), and up to one day of travel after the appointment(s). Travel days can be extended to two travel days before and two travel days after the research appointments if:

  • a patient is traveling more than 390 miles by car (approx. 6 hours), OR
  • the most direct Amtrak route will take more than 1 day.

*PMSF will reimburse travelers for lodging expenses if the research site is further than 50 miles one way from the traveler’s home. Travelers must stay in a standard room where available.

**Food and drinks will be paid based upon actual expenses, but not to exceed current per diem rates for the area. Current per diem rates may be found on the Per Diem Rates page in the U.S. General Services Administration (GSA) website: https://www.gsa.gov/travel-resources. Please contact PMSF if you have questions regarding the per diem rates.

How can I estimate my expenses?

Contacting vendors directly is the most accurate way to estimate your expenses. To get a general estimate without looking up actual costs, please visit https://www.gsa.gov/travel-resources.

What is acceptable proof of payment?

When submitting documents for reimbursement, PMSF requires the following:

  • A completed reimbursement worksheet (will be sent via email)
  • Itemized receipts (email confirmations, invoices, or pictures of physical receipts)
  • If air or train fare is reimbursed prior to the trip, submit proof of travel (boarding passes)

All proof documents must include:

  • Name of the payee (who the payment was made to)
  • Amount of payment
  • Items/service purchased
  • Date of payment

Questions? Contact PMSF by emailing travelprogram@pmsf.org, or by calling (941) 485-8000.

PLEASE NOTE: All funds are the property of PMSF and will remain as such until they are distributed on your behalf. Funds distributed on your behalf are a charitable gift and do not need to be repaid unless otherwise specified. While your funding may assist in covering a large portion of your responsibilities, there may be amounts that are not covered. Amounts not covered—as well as actions or decisions made in reliance upon this notice—are your responsibility

Last Updated: November 6, 2024