Participating in a natural history study is a profound commitment – not just for you and your family, but for the future understanding of SYNGAP1-Related Disorders. We know that travel to specialized centers can add a significant burden, especially when multiple visits are involved.
At CURE SYNGAP1, we are deeply grateful to every family that contributes to our ProMMiS Natural History Studies at Children’s Hospital of Philadelphia, Children’s Hospital Colorado, and Stanford Children’s Health. We understand that the cost and logistics of getting to these clinics can be a major hurdle.
While our studies often have limited budgets for patient travel, we want to empower you with resources that can significantly reduce, or even eliminate, your air travel expenses. Below are three invaluable organizations that help patients access distant medical care, including participation in vital research studies.
1. Mercy Medical Angels (MMA): Your Gateway to Commercial Flights
Mercy Medical Angels is a national non-profit that provides various forms of medical transportation, including commercial airline tickets – often utilizing grants from airlines like Southwest. They serve both children and adults.
- Key Requirements:
- Notice: For commercial airline tickets, they generally require a minimum of 21 days’ notice before your travel date.
- Financial Need: Household income must typically be at or below 300% of the Federal Poverty Guidelines.
- Medical Stability: The patient must be able to board a commercial plane, sit upright with a seatbelt, and not require in-flight medical attention.
- How to Apply: Submit your request through their online portal. Be prepared to provide details about your appointment and income verification.
2. Children’s Flight of Hope (CFOH): Dedicated to Pediatric Journeys
Specifically focused on helping children (under 18) and one adult companion reach specialized medical care, Children’s Flight of Hope is an excellent resource for our pediatric study participants.
- Key Requirements:
- Notice: You must apply and be accepted into their program before requesting a specific flight. They generally require 14 days’ notice for travel.
- Medical Verification: A doctor or nurse must complete a form confirming the child is medically fit to fly commercially.
- Financial Need: You will typically need your hospital social worker to complete a verification form or provide proof of government assistance (like Medicaid).
- How to Apply: Start by completing their online application form for new families.
3. Angel Flight (Regional Networks): The Power of Volunteer Pilots
Angel Flight is not one organization but a network of independent regional non-profits (Angel Flight West, East, Central, and Soars, to name a few) belonging to the Air Charity Network. These organizations coordinate volunteer pilots who use their own small aircraft to fly patients free of charge. This can be particularly beneficial for those living in more rural areas, as they can often utilize smaller, local airports closer to your home or destination.
- The Process:
- Request a Flight: Submit an online request through your regional Angel Flight branch (e.g., Angel Flight West for families heading to Stanford Children’s, Angel Flight Central or West for Children’s Hospital Colorado, or Angel Flight East for Children’s Hospital of Philadelphia).
- Medical Release: Your doctor must sign a form confirming you are medically stable to fly in a small, non-pressurized aircraft.
- Pilot Matching: Once approved, your mission is posted, and a volunteer pilot will accept the flight.
- Key Requirements:
- Ambulatory: You must be able to walk and step up onto the wing of a small plane (typically 12–20 inches off the ground).
- Weight Limits: You will need to provide your exact weight and the weight of your luggage for aircraft safety calculations.
- Flexibility: These flights can be affected by weather, so it’s wise to have a backup plan or some flexibility in your schedule.
Which Organization is Right for Your Visit?
Here’s a quick guide to help you choose based on your study site:
- For Children’s Hospital of Philadelphia (CHOP):
- Angel Flight East: Ideal for those traveling from other East Coast states.
- Mercy Medical Angels / Children’s Flight of Hope: Excellent options for commercial flights from anywhere in the U.S.
- For Children’s Hospital Colorado (CHCO):
- Angel Flight Central: Covers a wide range of Midwestern states leading into Colorado.
- Mercy Medical Angels / Children’s Flight of Hope: Great for commercial travel.
- For Stanford Children’s Health:
- Angel Flight West: Best for those traveling from Western U.S. states.
- Mercy Medical Angels / Children’s Flight of Hope: Strong options for commercial flights.
Tips for Applying:
- Plan Ahead: Begin your application as soon as your study visit is scheduled. These services require advance notice.
- Gather Documentation: Have your appointment confirmation letter from the ProMMiS site and any necessary income verification ready.
- Communicate: Keep your study coordinator informed about your travel plans and any assistance you are seeking. They may be able to help with medical verification forms.
We at CURE SYNGAP1 are deeply grateful for your participation in our ProMMiS Natural History Studies. By providing these incredible resources, we hope to make your journey to our study sites as smooth and stress-free as possible.
