PANDAS / PANS JOURNAL will be the first iOS app to allow caregivers to record symptoms and notes on a daily basis to diagnose and treat children with PANDAS / PANS.
What are PANDAS and PANS?
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) are characterized by a debilitating onset of intense anxiety and OCD in children.
In addition, children with PANDAS / PANS may experience tics and symptoms of depression, irritability, anxiety, and have difficulty with schoolwork. The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory autoimmune reactions.
Why PANDAS / PANS Journal?
1. Journal to record symptoms - For every child afflicted by this horrible condition, an entire family's life is turned upside down. Parents wake up every morning, wondering if it was all a dream, only to realize they are living the nightmare. PANDAS / PANS Journal is a place to record the daily behaviors, changes and medications of children with this condition to better-understand how to treat them.
2. Communication tool between you and a doctor - We found that doctor's appointments can be overwhelming. It was a struggle to remember all that had happened since the last appointment and we didn't want to miss communicating any important details. PANDAS / PANS Journal provides an organized way to share data with the care providers of your choice.
3. Graphical analysis and rating scales - As you enter data our system will help you see the subtle interplay between symptoms and treatment of your child, empowering you with the insight of what is working and what is not.
4. Contribution of data leading to medical breakthroughs - Researchers need data to make breakthroughs. You can choose to share your data to help with this process or keep it confidential.
Parents who have witnessed a child transform from happy and healthy to an inconsolable shell of their former self know the agony induced by this debilitating condition.
A child affected by PANDAS/PANS exhibits life-changing symptoms such as OCD, severe restrictive eating, oppositional defiance, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and the list goes on.
When PANDAS / PANS affected our lives personally, we found ourselves overwhelmed with feelings of isolation, helplessness, fear and grief over losing the person that our child once was. When we could muster up the energy after a long day of outbursts, oppositional defiance, and repetitive OCD questions, we tried to jot down notes for our next doctors' appointments. These dark days blended together, making it difficult to attend medical appointments with a clear and organized mind, prepared to ask the right questions and accurately recount the previous weeks and months.
As pioneers in the App Store health arena, we made it our mission to work on this PANDAS / PANS app with the goal to improve the management and healing process for the caregivers of children with this condition. We have developed a simple way to document our children's symptoms, vitals, medications and progress. We can send a history of our notes to medical professionals and visualize trends as they relate to medications, supplements and triggers.
With PANDAS / PANS Journal, you choose if and when to share your data and notes with others. Our hope is that solutions for this condition will come to us sooner with more data in researchers' hands. Tracking our children's symptoms and behavior makes this journey easier for us but also leads to a better understanding of this syndrome in general when shared with those who are looking for cures.
How does this Kickstarter funding get us kickstarted?
Your support will help us bring this project to completion and publication on the App Store.
This has been a labor or love for us, directly affecting our own lives and care management of our child. Along with some great designers and advisors we have already developed and tested the comprehensive prototype which has had amazingly positive feedback from parents and medical professionals alike.
The money we raise on Kickstarter:
Developing the initial version of the app is just the start. We have already been working on the app for nearly one year and have invested about $40,000 of our own money into engineering costs.
In addition to initially creating the app, there will be the following expenses to maintain and promote it for the first 6 months:
1.) SERVER - The servers securely backup your information so you do not lose your notes if your phone stops working. They also serve to synchronize your data between multiple devices if you have a spouse or significant other helping with the treatment and care of your child. We use Google Compute Engine to handle all of this, which is the same infrastructure that Google runs on. We chose this because it is secure and reliable and cost effective compared to other server options.
It will cost approximately $500/month to handle the server costs of this app. We will use $3,000 of the successful funding to pay for 6 months of server time, after which we hope to get a large enough base of users so that the app covers this cost.
2.) MAINTENANCE - Continued development for basic maintenance. With the continuous iOS updates and changes made by Apple, it costs a minimum of $500 / month just to keep an application of this type running. We will use $3,000 of the successful funding to pay for 6 months of continued development, donating our own time and money for any development that exceeds this amount.
3) FEATURE IMPROVEMENTS - We anticipate a lot of amazing feedback from all of you and will spend $8,000 of the funds to improve the application for the first release and immediate updates.
4) APP PROMOTION - Our mission is to raise awareness of this disease and to then give parents a tool to help them navigate the terrible trials that they will face. As app developers since the start of the app store, we know that it takes a critical mass of people using an app to keep it alive and to motivate us to continuously improve it. We will use $1,000 / month ($6,000 total) to promote the app and do our best to connect with the people out there who desperately need it.
Our goal is to hit a critical mass of users in 6 months so that the app can support itself through user subscriptions and ad revenue.
Ultimately we feel that this is only a small part of a bigger mission. PANDAS / PANS Journal has the potential be even more than this and we want you to join us on this journey, so that like us, you can become part of the solution for this nightmarish condition.
Where will I be able to download PANDAS / PANS Journal?
PANDAS / PANS Journal will be offered as a free iOS app on the App Store so that everyone has access to its benefits. This free version will be ad-supported to help cover server and developer costs. We will offer a subscription option that will remove ads and help us support further development and updates. Your continued support will help us continue to improve this app!
Risks and challenges
As with every software development project there are always obstacles! We have no doubt, however, that we can complete this project should we meet the minimum funding goal within the projected timeline.
As pioneers in the Appstore, we bring 8 years of healthcare tracking app experience to this project, and understand the challenges and hurdles of securely managing the data of millions of users.Learn about accountability on Kickstarter
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