#PainBox Request Form
We are currently funded to offer our #PainBox Program to children who meet the following criteria: been diagnosed with Hypophosphatasia, is age 3-17, has not started ERT treatment (Strensiq) yet or has been on treatment for less than 2 months. If you child meets these requirements, please fill out this form to the best of your ability. (If your child has already been through our #PainBox Program and is struggling again, please fill out relevant portions for a #BoosterBox consideration.) We are looking forward to offering you our support!
Type of Request
Pain Box Program Participant
Mental/Emotional Support (for family, parent/s, pediatric patient)
Referrals to Complimentary Health Approaches (Massage, Yoga, Reiki)
Primary Phone Number
ABOUT THE PATIENT
If you are comfortable, please share a picture of the patient.
This image may be shared with the shopping team & the organization.
Age of Patient
Patient Birth Date & Year
Patient Address #PainBox will be sent to:
Street Address Line 2
State / Province
Postal / Zip Code
Antigua and Barbuda
Bosnia and Herzegovina
Central African Republic
Cocos (Keeling) Islands
Democratic Republic of the Congo
Turkish Republic of Northern Cyprus
Papua New Guinea
Republic of the Congo
Saint Kitts and Nevis
Saint Pierre and Miquelon
Saint Vincent and the Grenadines
Sao Tome and Principe
Trinidad and Tobago
Tristan da Cunha
Turks and Caicos Islands
United Arab Emirates
British Virgin Islands
Isle of Man
US Virgin Islands
Wallis and Futuna
In brief, tell us the patient's story.
When was diagnosis? Are there any special circumstances? Is anyone else diagnosed?
In your own words, could you explain some of the hardships of living with a rare disease? There is no wrong answer here, and your thoughts could be helpful for others.
What is one thing you would like people to know about HPP and/or yourchild?
Has the patient already started treatment? If so, when was their first injection?
If known, please tell us how many injections are done each treatment session.
How often is the Strensiq dosage going to be, or is currently administered? This helps us know frequency and amount of items in the #PainBox.
6 times per week
3 times per week
If known, what type of needles is the patient receiving Strensiq using?
I'm Not Sure
When experiencing the injections, please indicate the level of discomfort the patient is feeling? Scale of 1 to 10. (1 being 'no pain' and 10 being 'severe pain')
When experiencing the injections, please indicate the level of discomfort TYPICALLY experienced
1 is no pain, 10 is severe pain
Please share any other relevant information about the patient regarding treatment.
GETTING TO KNOW THE PATIENT!
The following questions are the fun part! Designed by our youth leadership shopping team, this information helps them create the most personalized program for your kiddo. The more we know about the patient, the easier it is to customize a box of incentives that will have a significant positive impact.
If age appropriate, do we have your permission to send an over-sized stuffed animal to be an 'injection buddy' for this patient?
YES or NO
What type of PainBox are you interested in?
A Standard Box (For a patient who is about to start injections)
A Transitional Box (For a patient who has already started but needs extra support)
Patient's Shirt Size
Patient's Pant Size
Patient's Shoe Size
Patient's Favorite Type of Clothing (T-Shirts, Sweatshits, etc)
Patient's Favorite Color
Favorite Sports Team
Favorite Sports/Activity to Play
What do you use to watch tv shows/movies? (dvd player, on demand, Roku, Amazon firestick, Apple TV etc)
Favorite TV Show/Movies/Characters:
Do you already own your favorite movie or tv show?
Do you utilize Netflix, Hulu or other tv on-demand services? Please describe.
Does your family rent movies or go to a movie theatre?
What gaming program do you use? (X-box, WII, DS - which version?)
Favorite Video Games?
Does the patient have their own device (IPad/IPhone?)
Does patient have their own headphones? If no, would that be a beneficial addition for you?
What format do you use to listen to music? (CD's, digital, ITunes, etc)
Favoriate type of music/musical artist?
What things do you want the most for the patient? Or what would they want most?
Favorite Restaurants for your famiy? (Local and/or National)
Does the patient speak any other languages? If so, explain.
What is something the patient aspires to be or do?
This section is designed to help us offer support and encouragement for the WHOLE family! We know that if everyone is showing positive support and feels important, your household will be stronger and more successful on this treatment path.
Please list ALL members of the family living in the home, including name/age/shirt size. (Example: Brother, Nick, Age 9, youth med):
Any dietary restrictions for anyone in the family? Please describe.
Any favorite foods, treats or snacks? Please explain:
Any pets in the family? If so, explain and include their names:
If comfortable, please share the holidays that your family enjoys celebrating:
What are some of your family's favorite store to shop at? (be specific)
Does your family enjoy outdoor activities or yard games? Please explain:
Please select any and all types of rewards that are most appropriate for your family:
Please use this section to expand on any types of rewards your family might enjoy. While we can't guarantee specific items, we will do our best to match the types of rewards the patient enjoys. (Please include any accessories for toys or games that are needed)
We also understand this time is a stressful and trying time for your family. Please list some self-care/wellness-related activities that you and your family would enjoy doing. Examples may include yoga, walking in the local park, going golfing, etc.
Doe the family have any spiritual or religious affiliations that would be beneficial to know? (creating restrictions that should be observed) If so, please give explanation to help guide us.
Name, Gender and Age
Sibling #1 interests (this helps the shopping team with special gifts for siblings when appropriate)
Sibling #1 Shirt size:
Name, Gender and Age
Sibling #2 interests (this helps the shopping team with special gifts for siblings when appropriate)
Sibling #2 Shirt size:
Name, Gender and Age
Sibling #3 interests (this helps the shopping team with special gifts for siblings when appropriate)
Sibling #3 Shirt size:
Names, Genders and Ages
Additional Siblings' interests (this helps the shopping team with special gifts for siblings when appropriate)
Sibling #4 Shirt or clothing size:
Name, Gender and Age
Sibling #5 Shirt or clothing size:
If appropriate, please have the patient using Strensiq indicate anything they want The Avalon Foundation to know about them and their journey through this process. This section may also include any 'wish list' items that weren't mentioned previously.
The following questions helps our team identify support needs for the patient & family.
Have you already been connected with your OneSource worker or support specialist?
Do you have private insurance or Medicaid?
What is the name of your insurance company? (we collect this information so that we are able to help research what additional services or supplies your insurance can order for you.)
If you have any co-pay, would you be interested in our insurance partner program that can assess if out-of-pocket costs may be covered for you?
no thank you
Do we have your permission to share photos and videos on social media, our website and marketing materials representing the work that The Avalon Foundation does?
More specifically, what do you feel comfortable with us sharing on social media?
Your story without your names
Your story with names
all of the above
None of the above
If presented with a few questions, would your family or the patient receiving Strensiq be willing to video record themselves and send us back their answers?
Do we have your permission to email you regarding updates or communication from our organization?
Please provide PATIENT'S email address if you would like them added to our patient newsletter list.
PATIENT'S Phone Number (please provide if you would like our peer support team to reach out via text)
Name of Guardian (If different from who is filling out this form.)
Would you be interested in joining a Facebook group we have for families of The Avalon Foundation? If so, please give us your Facebook Name & expect a friend request from one of our team members.
How did you hear about The Avalon Foundation?
Alexion/ One Source written material
Alexion/ One Source caseworker
other patient family
Soft Bones representatives
patient support group
Your relationship to the patient
YOUR phone number
YOUR email address
Best time to reach you?
Please verify that you are human
Thank you for your request!
We appreciate the opportunity to help your family on this journey. You should hear from one of our team members within 2-5 days.
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