Ohana Mana Network for Neurometabolic Wellness Support | Ohana Mana Network for Neurometabolic Wellness

Mission

Our mission is to provide high-quality, compassionate, evidence based care to the underserved and vulnerable 'ohana of individuals and families affected by acute, chronic, and complex neurometabolic conditions, cerebral venous disorders, and CSF disorders.

We aim to honor their story; to illuminate hope grounded by both science and wisdom; and to nurture their homeostasis through networking, storytelling, knowledge-sharing, and care-coordination.

Vision

We envision a future where our 'ohana is seen, heard, and understood with compassion, readiness, and expertise across a spectrum of care that is free from variance across geographic, economic, educational, gender, or orientation landscapes.

The medical gaslighting that is deleteriously affecting timely diagnosis and care will cease to exist because we now know better than to accept or facilitate it with a lack of scientific understanding or compassion. In other words, when one of our 'ohana speaks about their body and what they feel, they are believed, the first time.

We believe that the patient knows their body and what they feel better than anyone. They may at times struggle to explain it in scientific or scholarly ways, just as science and scholars sometimes struggle to explain it for the purpose of a cohesive and unifying diagnosis. It is more important to listen to than to profess what you do not know.
We believe that you do not have to have all the answers to listen to, to help, or walk with someone. We believe these things are often just as important and healing as the answers we so desperately seek.
Be honest about what you know and what you don't. It is okay to not have all the answers. Prioritize the following over false promises or inaccurate diagnoses, "I do not know, but I will walk with you, and we will learn together."
What you do not today know, tomorrow you may discover.
Moreover, we believe that sometimes, we get it wrong. Diagnoses can be inaccurate. Health care providers are human and function within a constrained and struggling system. This is why it is important to recognize our common humanity, that we are all one 'ohana working together for the betterment of all.
When we get it wrong, we must take ownership of our mistakes, apologize, and seek to make amends.
We believe your story matters, you matter, that everyone matters. You deserve undivided attention, to be heard before diagnoses and conclusions are made.
We believe that diagnoses are simply tools to help us optimize our health, wellness, and longevity. They do not define our worth, nor do they tell the whole story of a person, a life. You are more than your list of diagnoses. Your worth is not defined by your ability or disability.
To seek freedom from pain or suffering is not weak, rather it is honorable and loving. Palliative care is not suicide and can even prevent it.
When provided therapeutic options, those who are suffering choose a life free from pain and suffering facilitated by those therapeutic options over an untimely or traumatic death.
Minimize risk, optimize benefit.

Mission

Vision

Values

"We walk with you."

~ Ohana Mana Network