Adrenal Alternatives Foundation
Adrenal insufficiency is a disease where patients are deficient in cortisol. Unlike diabetic patients who have a meter to check their blood glucose levels, adrenal patients cannot their cortisol levels outside of a lab. This disease has a high mortality rate due to lack of education on the protocols on this condition. Adrenal Alternatives seeks to provide this information to patients and medical professionals in an easily assessable form via a phone application. This app will be able to: Provide easy access to current lifesaving medical treatment protocols such as how to administer an emergency cortisol injection, surgical protocols, cortisol replacement dosing methods and diagnostic testing standards. Log Patient information. Patients can input data to track their pain levels, eating habits, vital signs, activity level, cortisol replacement dosages, etc and create graphs and data based on the information adrenal patients input in their log to provide their healthcare providers to better manage their disease and track progress. We also intend on integrating this app with upcoming adrenal biotech. There is currently no application for adrenal patient care.
Over 1,000,000 people in the US and Europe have been diagnosed with cortisol related conditions. Addison’s disease– Prevalence estimated to be between 40 and 60 cases per 1 million in the general population. Cortisol Dysregulation– The WHO states that conditions where in which cortisol dysregulation is indicated, form a part of a group of illnesses termed as “noncommunicable diseases” (NCDs) accounts for the majority of deaths with 17.9 million people dying annually. Noncommunicable diseases (NCDs) kill 41 million people each year worldwide, equivalent to 71% of all deaths globally. In the Americas, 5.5 million deaths are by NCDs. Research[9] also highlights the fact that cortisol dysregulation is present in up to 40% of stroke patients. Cushing’s disease – An estimated 10-15 per million people are diagnosed with this condition in the United States every year. Secondary Adrenal Insufficiency– Yearly estimated prevalence is 150–280 per million. Despite research supported, legal, medical advances, cortisol deficiency patients remain a poorly served demographic with high mortality rates and low quality of life due to lack of education on how to manage this disease.
SOLUTIONS TO CURRENT BARRIERS IN CORTISOL CARE:
- Early detection and diagnosis prior to experiencing adrenal crisis.
- Access to and awareness of all steroid options, which includes oral medications, subcutaneous cortisol injections and the cortisol pumping method.
- Access to and awareness of testing that can evaluate cortisol deficient conditions and provide clinicians with insight on better cortisol regimens and replacement methods.
- Education on the importance of medication compliance and the need to increase dosing in times of stress, sickness or injury.
Adrenal alternatives foundation is in the process of obtaining the funding to create our app, ADDY BUDDY to provide easy access to information on managing cortisol deficient diseases, appropriate diagnostic testing and all possible care options to manage conditions that result in cortisol deficiency or dysregulation. This app will also provide patients with a way to track their personal health data and provide this vital information to their healthcare providers to improve quality of life. We also intend on integrating this application with our upcoming adrenal technology such as the cortisol pump and the cortisol autoinjector device.
Over 1,000,000 people in the US and Europe have been diagnosed with cortisol related conditions
- Cortisol testing in emergency room situations is not a current standard of care. This app can be a vital resource to medical professionals unfamiliar with adrenal diseases.
- Cortisol deficiency patients are not typically given multiple options to manage their care. The lack of cortisol replacement options is likely due to poor clinician awareness on the latest research showing standard administration of hydrocortisone 2-3x daily is inadequate to replicate the body’s natural cortisol production.
- Advances in cortisol replacement medications are available in the United States, but awareness of options such as all steroid medications and alternative cortisol delivery methods such as subcutaneous injections and the cortisol pumping method are not prominent.
- There is currently no way to check blood serum cortisol levels outside of a laboratory setting, this app will give patients a way to track their symptoms in accordance to their lifestyle habits and give them data to provide their doctors to better manage their disease.
- Education on the proper management of cortisol deficiency is scarce within the endocrine community, who are mainly educated on diabetes and thyroid conditions. Advances such as circadian rhythm dosing can make massive improvements in quality of life for adrenal patients, yet many endocrinologists are unaware of this advancement.
- In the United States, EMS personnel are not educated on how to administer the life saving cortisol injection in the event of an adrenal crisis. This app will provide easily accessible information that can literally save lives in emergent situations.
The ADDY BUDDY app will save and improve the lives of millions of cortisol deficient patients. Knowledge is power, and we want to empower patients to manage their disease as best as possible.
- Other
We have aligned with many other non profit organizations, healthcare providers, research organizations and patient advocacy groups to eliminate the barriers in current cortisol care. We currently run an extensive list of programs to provide assistance, education and advocacy for all cortisol deficient diseases. For example, we are representatives in the Rare Disease Congressional Caucus and serve on the healthcare access, public policy and COVID 19 response committees. We have also partnered with pharmaceutical companies such as Eton, who recently released a massive inovati0n in cortisol medication with their product, Alkindi. Additionally, we have partnered with SOLUtion medical, who is currently creating the Twistject device to manage emergent low cortisol episodes. We are already reaching our goals of helping the cortisol deficient demographic, this app is another tool we can use to reach even more suffering patients and improve/save lives. Our challenge is exactly that, to SAVE and IMPROVE LIVES. This app will allow patients to access information on how to manage this deadly disease and eliminate the need for caregivers and even medical professionals to "google" in emergent situations. This demographic suffers from a high mortality rate because it is not well understood and this app will help bridge the knowledge gap.
- Prototype: A venture or organization building and testing its product, service, or business model.
We are securing the funding to finalize this app. We intend on releasing a beta app program to our members before it's official launch.
- A new application of an existing technology
This app will change the way adrenal patients access information. Currently patients have to wade though google and there is much conflicting information on cortisol care. This app will truly be a revolutionary advancement, especially when it is linked to our upcoming adrenal biotech.
Any phone or tablet that has the capability to download an app can be used for this innovation.
Medical app technology provides: Instant access to credible, lifesaving information on disease protocols, which can lead to a reduction in hospital visits, therefore reducing healthcare costs for both patients and insurance companies and provides easy access to patient data for health care providers and also is a convenient way for patients to track their symptoms, lifestyle and progress.
Source:
Mobile Devices and Apps for Health Care Professionals: Uses and Benefits
C. Lee Ventola
P T. 2014 May; 39(5): 356–364.
PMCID: PMC4029126
Article PubReader PDF–3.0MCite
- Big Data
- Biotechnology / Bioengineering
The risks with this technology are the same as having a laptop, phone or computer such as data breach or EMF exposure. We would ensure our app would have appropriate security standards and be HIPAA complaint.
- Persons with Disabilities
- 3. Good Health and Well-being
- 4. Quality Education
- 17. Partnerships for the Goals
- United Kingdom
- United States
- United Kingdom
- United States
We currently serve the entire cortisol deficient demographic internationally.
Our team also represents adrenal disease directly in congress through the Rare Disease Legislative Caucus. Our team proudly serves on the COVID19 response, Public Policy and Healthcare Access congressional committees. We are currently conducting a survey on Quality of Life in adrenal insufficient patients on steroid medications in preparation for a pilot study to explore the differences of various steroid replacement methods and medications to treat adrenal insufficiency. There has never before been a study that compares all forms of steroid administration for the treatment of cortisol deficiency, therefore this information will provide insight into the effectiveness of various management tools in adrenal disease care. We are working on innovations that create more biotechnology to manage adrenal disease such as our Emergency Injection Instruction QR code that provides instant access to instructions on how to administer the life saving cortisol injection. We have also published two books:
Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency book contains factual information supported by credible medical sources, patient surveys and personal testimonies of real adrenal patients.
Cortisol Pump 101: A Patient’s Guide to Managing the Cortisol Pumping Method book includes medical studies, clinical research and documented patient empirical evidence on how to safely and effectively manage the cortisol deficiency via the infusion pump.
Our app will allow us to further our work: Adrenal Alternatives Foundation is a 5o1c3 nonprofit patient advocacy organization dedicated to education, advocacy and encouragement for all adrenal disease.
Our membership has shown consistent growth and our publications remain at the best seller list. Our progress is also measured by the patients whose lives we are improving by assisting them and also educating healthcare professionals on how to best manage this disease. Our website is frequented and we are currently the only non profit organization in the entire world dedicated to helping patients access the cortisol pumping method. We provide solutions for a previously unserved demographic.
- Nonprofit
11 Volunteer Staff Total.
Our team is a combination of licensed medical professionals, engineers, scientists, educated individuals and also adrenal patients. Our team has experienced both sides of the stethoscope and allows us to create solutions that will positively impact both patients and healthcare providers.
Equality is at the forefront of our mission at Adrenal Alternatives Foundation. The disabled demographic has specifically bene left out of many inclusion circles and we believe that being "differently abled" can be a strength instead of a weakness. We empower the disabled demographic that they can be victors instead of victims in their lives.
Yes, our CEO has Addison's disease, as do two of our board members.
- Individual consumers or stakeholders (B2C)
As the CEO of Adrenal Alternatives Foundation for years and as an adrenal disease sufferer myself, I have watched this demographic suffer and even die simply because family members, caregivers and medical professionals did not have the knowledge to properly treat cortisol deficiency. Adrenal Alternatives has the knowledge, the team and the will to make a positive change for millions of people, the only thing standing in our way is the funding. I am applying for this in hopes that Horizon will see the benefit in what we are trying to accomplish and fund our application, Addy Buddy. For more information on our organization, please visit https://adrenalalternatives.co...
- Human Capital (e.g. sourcing talent, board development, etc.)
- Business model (e.g. product-market fit, strategy & development)
- Financial (e.g. improving accounting practices, pitching to investors)
- Legal or Regulatory Matters
- Public Relations (e.g. branding/marketing strategy, social and global media)
- Monitoring & Evaluation (e.g. collecting/using data, measuring impact)
- Product / Service Distribution (e.g. expanding client base)
- Technology (e.g. software or hardware, web development/design, data analysis, etc.)
We are a non profit organization run solely by an amazing team of education, licensed medical professionals and volunteers. With the proper funding and resources, we could truly change the way cortisol deficiency is managed, save and improve lives.
We would love to align with resources to help us improve our upcoming adrenal technology and organize the data we are collecting in our cortisol care survey.