We are both honored and overwhelmed at the excitement and interest that our project is already inspiring. Many of you have reached out with offers to help us, and we are grateful for each and every offer. Others want to know if their children can be featured in the film. We have put together this FAQ to help answer some of your questions during our pre-launch phase.
How is your program different from other approaches to treating chronic illness?
Conventional medicine tends to view chronic illness as something to be managed based on symptoms, rather than something that can be reversed based on an understanding of underlying causes. Far too often, clinicians focus on symptom suppression and control. In contrast, the Documenting Hope Project focuses on addressing and mitigating upstream causes of dis-ease, rather than on downstream symptom management. We aim to show that when individuals are provided with the appropriate therapeutic support and a healing environment, chronic illnesses begin to reverse.
Why are you including seven different chronic conditions? Why not just one?
Growing scientific literature supports a personalized approach to identifiable molecular, physiologic and functional stresses. Similarly, the methods for reversing underlying inflammatory mechanisms common to most chronic illness can also be applied across many disease categories. As these connections are demonstrated, while addressing the unique aspects of each child’s health, the Documenting Hope Project offers hope and a thoughtful challenge to the current common symptom treatment paradigm. By providing a viable alternative to the disease/diagnosis-based ‘siloes’ that characterize our current system, the Documenting Hope Project is part of a lasting paradigm shift.
Why hasn’t anyone done this comprehensively before now?
We have witnessed breath-taking advances in human health derived through an enormously rich and complex modern scientific enterprise. We have also been trained to believe that many of the chronic illnesses we see in our children (such as autism) have a thoroughly genetic, as opposed to a life-style epigenetic, basis. Indeed the specialization that enables our best minds to achieve medical and scientific miracles when it comes to acute care turns out to be a hindrance when it comes to the prevention and treatment of chronic illness. Technological advances sometimes discourage us from examining the profound influence of what we eat, drink, think, and do;, or in other words, the influence of lifestyle. The Documenting Hope Project is unique because it brings together the best that modern science has to offer with the wisdom of traditional and time-honored healing practices that honor the influence of life choices using least risk, highest gain approaches in systematic and well documented ways.
How is the Documenting Hope Project organized?
We are excited to pilot an elegant model of care that supports families in their individual recovery efforts and makes it possible for our healing professionals to work more collaboratively and effectively towards a common goal. Our model relies on:
- Medical Mentors who interpret laboratory assessments, support treating physicians, and help to identify supports that should be resourced for individual families based on a real-time assessment of each family’s needs. Medical mentors have clinical experience but are not full time clinicians. They participate in cutting edge science, but have a deep respect for time-honored traditions and traditional medicine approaches. They are chosen for their unusual combination of breadth and depth across a complex landscape of issues in healthcare; for their ability to tap a vast global network of clinical, research, public policy, industry and esoteric experts in chronic illness; for their demonstrated ability to collaborate across narrow therapeutic boundaries; for professionalism, seniority, and respect amongst colleagues that have earned them the right to mentor; and for their compassion.
- Community health coaches chosen for their experience and compassion, who provide intensive day-to-day support to our families as they undergo assessments, implement lifestyle changes, and develop new habits.
- Physicians with a track record of looking upstream at causes rather than downstream at symptoms, who are trained in functional laboratory assessment and systems biology and with a collaborative approach to recovery that presumes a role for therapeutic modalities which extend beyond their own scope and expertise.
- A carefully vetted pool of expert practitioners in each of our program’s five geographic locations who will be called upon in a manner consistent with the individual needs of each child. Examples of skill sets to be represented in the Documenting Hope Project practitioner pool would include nutrition, osteopathy, biological dentistry, developmental optometry, acupuncture, chiropractic, energy medicine among other skills and competencies.
- A state of the art technological interface through the Open Medicine Institute’s electronic health record and bioinformatics platform that will enable consistent and accurate data capture for each family enrolled in the project. This technology platform will enable an unprecedented level of communication and collaboration between all members of the family’s designated healing team and Documenting Hope Project mentors and experts.
I like your organizational model but who will be working directly with the children?
The Documenting Hope Project is building our practitioner pool in each of the five geographic areas where the project takes place. Each child will have a core healing team (master mentor, health coach, clinical care provider, nutritionist and specialists as needed) from our vetted pool that the program determines may be more helpful on a case-by-case basis.
Have you identified your medical mentors?
Currently the Documenting Hope Project is fortunate to be under the guidance of two experienced medical mentors, Dr. Martha Herbert and Dr. Russell Jaffe. We are currently identifying select additional medical mentors to become part of our collaborative team. The role of medical mentor is more fully explained elsewhere but requires an unusual combination of experience, skill, seniority, and sensitivity as well as an active commitment to and participation in the operation of the Documenting Hope Project.
Is the Documenting Hope Project truly multi-disciplinary?
Yes! Our approach is unique in that we have attracted a team of diverse experts to contribute their varied set of clinical, intellectual and scientific resources and to apply their knowledge to a group of sick children. The Documenting Hope Project has attracted advisors, clinicians and scientists from the following disciplines: Neurology and neuroscience, clinical pathology, Chinese medicine, environmental medicine, developmental optometry, functional dentistry, biologic psychiatry, functional medicine, integrative nutrition, nutrigenomics, homeopathy, internal medicine, Ayurveda, osteopathy, anthroposophic medicine, pediatrics, naturopathy, molecular biology, developmental physiology, mindfulness practices, massage and bodywork, systems biology, informatics, methodology, research design and other fields.
You have said your program is multidisciplinary but what type of information will you need to know about the children in order to guide them towards recovery?
Each child will be assessed individually, in a manner that looks closely at things like family health history, family dynamics, lifestyle, and environmental inputs as well as unique biochemistry, energetic profile, physiology, genetics and heritable information. This entails evaluating the individual’s genetics, microbiome, metabalome and other integral components of systems biology as well as their past and current exposome (environmental exposures).
Okay, but what exactly are you going to do with these kids to assess them?
The Documenting Hope Project will require select laboratory samples from each child to include the collection of blood, urine, and stool. The project will also require the family’s participation in other select non-laboratory assessments. A non-laboratory assessment could be in the form of a questionnaire or an evaluation. It could also be in the form of a visit to one of the Documenting Hope Project’s practitioners for something like a developmental vision assessment, an osteopathic evaluation, or an assessment for retained reflexes. Efforts will be made to use the least invasive and most manageable assessments available including biometric.
Who is going to help the families do what the program requires of them?
A holistic health coach will be available to each family and will play a key role in helping each family to comply with the program guidelines as well as to make lifestyle changes as proposed by the program. In addition, the Documenting Hope Project Program Director will be in charge of the project’s master schedule and provide oversight for each family.
Once you have assessed each child, what kind of recommendations are we likely to see you make for the children enrolled in the Documenting Hope Project?
The Documenting Hope Project has a preference for less toxic solutions that address causes not symptoms. Today, most children with a chronic illness are given pharmaceutical medications to manage and control symptoms, but rarely do clinicians help the patient address underlying root causes of disease. The Documenting Hope Project intends to use symptoms only as information, to help establish a complete understanding of underlying imbalances and what can be done to correct those imbalances. Recommendations may include, but may not be limited to: diet modifications, targeted individualized supplementation, developmental interventions, environmental modifications, and emotional, energetic and mindfulness practices. As each child responds and adapts to therapeutic interventions, they will be continuously monitored and reassessed.
Are there any new untested therapeutics that will be trialed in these children?
The Documenting Hope Project does not believe that a “magic bullet” therapeutic is the key to healing and recovery. The program is not about testing therapeutics. The Documenting Hope Project is about supporting health in ways that respect the innate healing power of the human body. We begin with oft-neglected foundational supports such as nutrition and clean environment. Then we apply an integrative and multi-disciplinary approach that honors the needs of each individual child. Our strength lies in the careful resourcing of experienced and specialized professionals at the appropriate time for each child. The aim is to offer personalized care that results in improved outcomes rather than “one-size-fits all” medicine.
What makes your team qualified to undertake this task?
Just as the climate change crisis has resulted in an unusual level of collaboration and cooperation among scientists and experts called to action to address the crisis, the health crisis that we are currently facing requires an uncommon and unprecedented level of cooperation among medical, scientific and health experts called to serve this generation of sick children. We have amassed an impressive group of experts that are part of a “coalition of the willing,” and who believe that there is a “fierce urgency of now” to protect the health of our children. Our medical and program advisors collectively have hundreds of years of experience in understanding and reversing chronic disease and have been called to lend their advice, guidance and participation.
How are the laboratory tests that the children receive different from what they might receive at their pediatrician’s office?
To put it simply, the Documenting Hope Project's laboratory assessments will be functional and predictive. We believe that medical science is caught in a bind because while there is much promise about personalized medicine, we are still stuck with methodologies that treat everyone as if they were identical or statistical. It is time to take the next step and really personalize evidence-based care. We know enough today to do functionally meaningful tests and to compare them to goal values not statistical ranges that are easily over-interpreted and misunderstood.
What types of specific laboratory tests or assessments will the Documenting Hope Project participants receive?
If you would like more detailed information about the assessments that have been carefully chosen by Documenting Hope Project, you may request a more detailed summary by contacting the program director, Josie Nelson. Some examples of clinical laboratory tests that the children will receive include:
• Llymphocyte response assay, a means through which food/environmental sensitivities and inflammatory burden can be assessed
• Organic Acid Tests of metabolism
• Amino Acid profile of other aspects of metabolism
• Comprehensive digestive stool analysis assessing the microbiome
• Retained reflex assessments assessing function and maturity
The program sounds great, but expensive. How can this model be made scalable and available cost-effectively?
The Documenting Hope Project intends to provide ‘proof-of-concept’ to support this important new model of personalized and comprehensive care and hopes to inspire others to make these solutions available in a cost-effective way. As an example, some of the clinical assessments that the Documenting Hope Project will be using are cost-prohibitive because they are new and have not yet achieved traditional market efficiencies. It is our hope that by paving the way forward, there will be more demand for these types of assessments creating economies and efficiencies. Additionally, as part of the Documenting Hope Project, our team will be training health coaches across the country, making the model tested in our program accessible to more and more individuals over time.
Is food really that important?
Yes, we believe that it is. In the words of Dr. Herbert, “I tell parents of children of special needs that your child cannot afford empty calories. They need the highest possible quality nutrients at every moment because they don’t have time or space to eat calories that don’t also support other needs. And this is something where we’ve been led to believe that doesn’t really matter, but it actually matters a whole lot. In order to maintain resilience in a toxic, stressful world we need to maintain high nutrient density and the maximum possible range of nutrients every day.”
You talk a lot about environmental stressors. Is there one toxin in particular that is affecting these kids?
We are very concerned about the emphasis on trying to find ‘the smoking gun’ for any of these chronic conditions … the one thing, that if eliminated, could return our children to a state of good health. We believe that the problem is much bigger and that we need to modify our exposure to many things that our systems are not equipped to handle. There are certain exposures that no one’s system is equipped to handle such as intense exposure to radiation or a heavy dose of petrochemicals or a large dose of heavy metals. But there are things that some of us have a harder time with than others because of our genetic or epigenetic weaknesses, or because of our inability to fortify our bodies to the point of resilience. We are especially concerned about continuous low-level exposures to multiple chemicals that deplete individuals of their essential protective nutrients and impair a body’s ability to self-regulate and heal.
Why are you making a film about this program?
We believe that part of the reason why so many children are sick in this country is because we have damaging and unhealthful habits, practices, and routines that are deeply imbedded in our culture and our collective habits and assumptions. To protect our children’s health, it will require a cultural shift, a conscious effort to modify our ways of living. This is a tall order indeed. We believe that by sharing a message of hope, that children can recover from chronic conditions, and by showing how these children get better in a compelling feature-length film, others will be inspired to take responsibility for the lifestyle and health choices that they make in their own families and communities. We want to provide viewers with evidence of hope so that at they will be inspired to test these practices in their own lives.