Patient & Family Support Program
By Kids, for Kids
What is the #Painbox Program?
Our #Painboxes are customized care packages offering an incentive program and encouragement specifically By Kids, for Kids. Through peer care and compassion, our patients develop resilience, strength, courage, trust, and family unity during critical treatment that can restore joy and wellness. We also focus not only on the patient, but on the patient’s entire family. Through our Patient Support Program, we help the patient by also helping the family.
Our kid patients tell us that the encouragement and support coming from other kids who understand what they’re going through is what gives them the determination and strength to get through their treatments.
Inside the #Painbox
How It Works
The #Painbox Program is Avalon’s original vision – a customized care package, tailored to each patient and their family.
Successful treatment requires much more than just completion of the injections – it requires the cooperation of the child, her family, and her medical team.
Avalon’s experience led us to believe there must be a way to ease a child’s transition into the treatment regimen, as well as provide emotional and psychological support to children and their families.
The child needs to be supported, motivated, and encouraged to brave the frequent shots and resultant side effects. The parents need to be educated on how to best comfort their child during this painful process and properly administer the injections. And the child’s siblings still need to receive attention at a time when their parents are stretched very thin.
Our #Painbox Program
Why it Works
Many children develop needle-phobia beginning with routine vaccination in early childhood, and this anxiety often grows with repeated injections if their pain is not properly managed. A 2014 study looked at the most effective methods of minimizing perceived pain in children during these types of injections.
They found that rewarding children with toys and fun activities after the injections relieved pain in 65% of children surveyed.
Avalon’s results with the incentive system of the #PainBox are paralleled by significant research regarding the importance of positive reinforcement and pain management in children.
In addition to the #Painbox program, our Patient & Family Support staff coaches parents on how to use the PainBox system in combination with positive messaging, creating routines, as well as the importance of family bonding to provide a wholistic approach for success.
Other Ways we support your family!
ADDITIONAL SUPPORT PROGRAMS FOR RARE FAMILIES
Brough to us by AcrossHealth
MATRIX is a patient & caregiver portal designed to streeamline, simplify, and enhance the care journey; allowing patients to own and control their own data. This platform has been customized for HPP patients to provide a very simple tool for recording, tracking, and sharing all relevant information with medical professionals, schools, therapists, family members – anyone – on YOUR terms. Using this for your/your child’s medical journey will enhance care and wellbeing throughout the life of the patient. This is provided COMPLIMENTARY to our TAF families by AcrossHealth and The Avalon Foundation.
Review these two videos for more information.
We are proud to partner with BasiCare Plus to deliver these telehealth benefits to our TAF Nation!
- State-of-the-art TELEHEALTH services with ZERO copay family access, providing national coverage and access to board-certified physicians.
- FREE acute MEDICATIONS tailored for telehealth consultations, encompassing over 70 drug classes with no limitations on dose, duration, form, or frequency, available at over 65,000 pharmacies.
- COUNSELING SERVICES featuring $0 visits, unlimited mental well-being support, and access to financial and legal services. Enjoy free counseling on-demand, including face-to-face virtual visits.
- NO CLAIMS, NO COPAYS, UNLIMITED USE
The Avalon Foundation is excited to invite all TAF Families to FLYING HORSE FARMS!
ABOUT FLYING HORSE FARMS
We provide camp experiences free of charge to kids and young adults 7-21 and their families with diagnoses including cancer, heart conditions, rheumatologic diagnoses, blood disorders, lung conditions, gastrointestinal disorders, craniofacial diagnoses, spinal cord diagnoses and mental health conditions.
CAMP AT A GLANCE
$0 cost to campers & families
70+ campers sharing similar diagnosis & experience
200+ acres to explore
24/7 onsite medical care
7 locations in the USA
2024 CAMP CALENDAR*
RARE DISEASE WEEK: July 20-25
SIBLINGS WEEK: July 29- Aug 3
TRAILBLAZER for transitioning to adulthood: Aug 9-11
FALL FAMILY CAMP WEEKENDS:
Oct 11-13 Oct 25-27 Nov 1-3
*relevant dates for Mt. Gilead, Ohio location near Columbus- open to all US residents
REGISTRATION DUE MARCH 15, 2024
Click this flyer to learn more:
2024-fhf-family-rare-disease-camp
Don’t forget to join our private Facebook group:
#PainBoxWarrior Families
to connect with other parents, stay current with our foundation & celebrate the wins in your family!
OTHER FAVORITE RESOURCES
There are many resources out there, and we have our favorites. Below are websites and organizations that you can learn from and lean on for additional support.
NORD
GLOBAL GENES
ANGEL AID
RARE MAMAS
RARE CONNECT
MAMA TRAUMA BARBIE
SOFT BONES
RARE GURU
ASSOCIATION OF CHILD LIFE PROFESSIONALS
