FAQs

“Journey” is the name we use to refer to the all expenses paid trips we provide for individuals diagnosed with rare genetic disorders.

You must be 21 years or older.

You must be clinically diagnosed with a rare genetic disorder.

Adults with these conditions are welcome to apply: Neurofibromatosis Types 1 and 2, Schwannomatosis, Von Hippel-Lindau Disease, Charcot-Marie-Tooth Disorder, Hereditary Peripherial Neuropathies, Muscular Dystrophies, Ataxias, Huntington’s Disease, Hereditary ALS, Hereditary Spastic Paraplegia, Usher Syndrome, Leber’s Hereditary Optic Neuropathy, Wolfram Syndrome, Cockayne Syndrome, Alstrom Syndrome, Retinitis Pigmentosa, and others. 

You must be a legal resident of the United States, but are not required to be a US citizen.

You must be able to communicate your journey request and comprehend/participate in journey experience.

You must have a medical prognosis of longer than nine months to live and not currently be considered terminal. (We regret the need to be blunt, but it is better for you and for us to be able to plan this important journey in a way that offers a realistic, enjoyable experience.)

You are required to bring one person to accompany you on your journey (e.g., friend, spouse, family member, etc.) known as your journey companion.

Your journey companion must be 21 years or older and currently legally reside in the US, but is not required to be a US citizen.

Your journey companion must be physically able to travel and willing/able to assist you if needed.

Your journey companion should be someone you fully trust and would enjoy traveling with.

Primarily it’s a safety issue – if you have a medical emergency while on your journey, having a friend or loved one there who can call for help will make a big difference in ensuring your safety.

Your journey is all about YOU, but we hope that bringing along a companion will help make it a more enjoyable and relaxing experience.

You must live within the contiguous United States, excluding Hawaii, Alaska, Puerto Rico, and all other offshore territories.

You don’t have to be a US citizen, but need to currently legally reside in the US.

Finances permitting, you can visit anywhere in the contiguous United States, excluding Hawaii, Alaska, Puerto Rico, and all other offshore territories.

We do not guarantee that you will be able to go to the destination of your choice.

Destinations are dependent on the cost of airfare.

Destinations are dependent on your mobility and what will be both reasonable and enjoyable for you overall.

Our Being Positioned (BP) Team works with you to create a journey itinerary catered to your specific travel interests.

Once your application is approved, we will send you a survey asking about your likes, dislikes, and favorite activities.

Our BP Team will be in communication with you throughout the travel planning process, so you will have the opportunity to influence almost every aspect of your journey.

Our BP Team books and coordinates all journey logistics.

Our BP Team will provide you with your journey itinerary before your departure and will be available to you via phone throughout your journey should a question or need arise.

BP does not reimburse individuals for pre-planned or previously taken trips.

A journey host is someone we provide to accompany you on your journey.

The host does not replace your journey companion. You are still required to be accompanied by a family member, friend, etc. on your journey.

A journey host will handle all transportation needs during your journey, join you during certain activities, and will be available to you should you have any issues during your journey.

A journey host can help make your journey more relaxing and will handle all financial transactions.

If you choose to have a host on your journey, then your destinations will be limited to Florida and Texas. We do not currently have journey hosts available in any other states.

Being Positioned reserves the right to require you to have a host on your journey if they feel it is necessary.

You are required to complete the application yourself, but may have the assistance of someone else due to physical limitations.

If you had a wish through Make-A-Wish Foundation as a child, or any other wish granting type organization, we need to know when that was and what your wish was, in order to determine your eligibility at this time.

Our updated travel policy is based on recommendations from the Center for Disease Control and Prevention (CDC): (Being Positioned will continue to review and update its travel policies as needed.)

We strongly advise all participants to be up to date on their COVID-19 vaccinations before travel and/or large gatherings. We do not require a current COVID-19 vaccination for journey approval or for travel.

The representative signature on the HIPAA form is only for instances where someone is signing on behalf of a patient. 

So, it would be a legal representative (Medical Power of Attorney) for a patient if the patient is unable to physically sign the form on their own.

Once your application is received, we will send an email confirming your application has arrived and is under review.

You will receive a following email stating whether your application has been approved or denied.

A decision about whether your journey is approved or not will typically take about one month. This may vary depending on how long it takes to verify your medical information with your medical team/doctor.

We require a minimum of two months to plan a journey, but on average it will take 3 to 4-months, from the time they are approved, for someone to go on their journey.

You need written medical clearance from your physician.

You need a major credit card or debit card with enough funds to cover expenses that exceed the agreed upon journey budget, as well as the unforeseen costs associated with a hospital stay and getting home in case of an emergency.

Being Positioned will reimburse you for journey expenses (excluding unforeseen emergencies) as long as the amount falls within the agreed upon journey budget.

You will be required to keep all receipts and track your expenses during your journey in order for Being Positioned to reimburse you after your journey is completed.

Being Positioned reserves the right to refuse to reimburse for certain expenses if they are deemed offensive, inappropriate or inconsistent with the values of our organization or our corporate supporters.

We do not ask for your credit card number. Please do not submit it in the application.

Since your journey will require a hotel stay, you will need a credit card at check-in to cover incidentals. If using a debit card for hotel check-in please be aware that a hold will be put on the card from the hotel. Often, the blocked funds will not be released until about a week after your stay.

Being Positioned will pay for your airfare, hotel, transportation, food, and activities as long as it falls within the journey budget and so long as the expenses are not deemed offensive, inappropriate or inconsistent with the values of our organization or our corporate supporters.

Prior to leaving for your journey, our Being Positioned Team will discuss your daily budget for food, activities, and souvenirs.

Being Positioned will provide you with a method of payment during your Journey to cover all expenses within the Journey budget.

You will be required to pay for any expenses exceeding the journey budget.

Should you have a medical emergency during your journey, we are unable to assist in any way.

Each journey will be anywhere from 5-7 days long depending on budget and the recipient’s availability.

Our Being Positioned team will do their best to accommodate the recipient’s medical needs with regards to how it affects their travel abilities. (e.g., wheelchair rental, etc.)

We do not provide a nurse or aide to care for the recipient during their journey.

Should you have a medical emergency during your journey, we are unable to assist in any way.

All medical documentation and personal information we receive will be stored in a secure file. Only Being Positioned employees will have access to your information during the application process.

Only Being Positioned employees who need your information to perform a specific job (booking flights, etc.) are granted access to personally identifiable information.

No, we are not a religious charity.

However, our founder, Christina, does mention her faith as she copes with her own diagnosis.