Childhood Peroxisomal Project

A Research Foundation for Children with Peroxisomal Disorders

Plasmalogen lipid molecules are deficient in children born with peroxisomal diseases because these critical molecules are made in the peroxisomes. Plasmalogens are critical for quality of life as they are involved in the function of the lungs, eyes, muscles, nerves, and more. Because of the extreme time sensitivity of these diseases, this project is the first feature program of the Dr. Goodenowe Research Institute. The project is open to all children affected by these diseases and their families – Dr. Goodenowe wants to make sure any child with a peroxisomal disease who can benefit from plasmalogen supplementation and advanced biochemical monitoring is able to access it, free of charge and as soon as possible.

Why? Because it is the right thing to do! 

Clinical Trial Details

Enrolment status: OPEN (ongoing)

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Free Program

Would you like to get started? There are absolutely no ‘strings attached’. Simply fill out this form and we will be in touch for the next steps! We can arrange an introductory call to answer any of your questions and to explain more about the blood testing, or we can simply send you the plasmalogen supplements directly to you at no cost – for affected children, their parents, and siblings.

Dr. Goodenowe’s team can contact your doctor to provide information on the plasmalogen supplements and blood testing. Hundreds of doctors around the world are already using Dr. Goodenowe’s plasmalogen supplements in people of all ages, including as part of clinical trials such as the recently completed clinical trial with Dr. Sheldon Jordan, a board-certified neurologist MD; and Dr. Cynthia Keller, a pediatrician who is our lead advisor for this project.

Dr. Goodenowe believes that there is no one-size-fits-all solution. He is offering his advanced lab testing also free of charge in order to gain critical insights into the biochemical status of the affected children. We will provide the blood test collection kits at no cost – you can either take it to your participating doctor or we will help arrange a home blood draw for you. 

We look forward to hearing from you to see how we can best help!

 

First name (child):

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Diagnosed disease*:

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Doctor’s name:

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Would you like to join the clinical trial? Yes send me more information OR No

*In order to receive the plasmalogen supplements at no cost, there must be a diagnosis of a peroxisomal disease such as ……

Breaking RCDP

Dr. Goodenowe has specifically chosen RCDP focus on in his Breaking RCDP Program. You can find more details about the science behind RCDP and the strategies that available today to make a difference.

Rhizomelic Chondrodysplasia Punctata (RCDP) is a rare disease that affects approximately 1 in 100,000 children. The disease has a very precisely defined biochemical cause. They are unable to make precursors for an essential class of membrane lipids called plasmalogens. Plasmalogens are a unique class of lipid in that they contain a special chemical bond called an ether bond. Dietary availability of plasmalogens and plasmalogen precursors is very limited the vast majority of these precursors are made in every cell of your body (except red blood cells). Due to the low dietary availably and their impaired endogenous biosynthesis capability, these children quickly become severely plasmalogen deficient. Because adequate plasmalogen levels are essential for numerous biological functions such as myelination, neurological function, neuromuscular function, cholesterol regulation, lung function, cardiac function, vision, neurogenesis and more, these children suffer severe direct and indirect health consequences.

As part of his research in aging, dementia, and Alzheimer’s, Dr. Goodenowe invented and patented specific and effective bioavailable plasmalogen precursors that are able to bypass the impaired plasmalogen precursor biosynthesis pathway in RCDP. Due to the broad applicability of effective, orally bioavailable plasmalogen precursors, Dr. Goodenowe subsequently invented and developed structurally specific plasmalogen precursors identical to those found in trace levels in human mother’s milk and certain marine animals. Since Dr. Goodenowe’s newest generation of orally bioavailable plasmalogen precursors are naturally occurring, their use is no longer restricted to a specific disease indication as required by the FDA New Drug Approval process for molecules that are not naturally occurring. Anyone can use them to restore plasmalogens or enhance plasmalogen related human functions in the same way that people use vitamin C for multiple purposes. You do not have to be diagnosed with scurvy and then get a prescription for vitamin C to buy and use vitamin C.

Plasmalogen precursors are essentially a vitamin. And like any vitamin, there are different degrees of deficiency and sufficiency. And like any vitamin, a deficiency results in certain characteristic clinical observations and a multitude of down-stream negative effects. RCDP is more serious than a typical deficiency in that the deficiency is not environmentally acquired – it is caused by an internal biochemical dysfunction and it is occurring during the early neurological and neuromuscular development of the child and therefore certain biochemical and physiological systems have and continue to adapt in their attempt to maintain as many essential functions as possible with as little plasmalogen as possible. Therefore, it is critical that plasmalogen precursor supplementation be initiated immediately upon receiving a diagnosis. Also, other biochemical systems need to be evaluated and supported as necessary. And finally, the progress of rebuilding the lost physiology and function needs to be monitored.

Find out more here.

INVESTIGATORS

Dr. Goodenowe works with leading practitioners around the world. The main investigators for this project are Dr. Sheldon Jordan and Dr. Cynthia Keller.

Dr. Cynthia Keller

Pediatric Physician

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Dr. Sheldon Jordan

Neurology Physician

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Dr. Dayan Goodenowe

Biochemist, Neuroscientist

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Dr. Cynthia Keller

Pediatric Physician

Role in the project is….

Brief background is…

Dr. Sheldon Jordan

Neurology Physician

Role in the project is….

Brief background is…

Dr. Dayan Goodenowe

Biochemist, Neuroscientist

Role in the project is….

Brief background is…

Dr. Cynthia Keller

Pediatric Physician

Role in the project is….

Brief background is…

Dr. Sheldon Jordan

Neurology Physician

Role in the project is….

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Dr. Dayan Goodenowe

Biochemist, Neuroscientist

Role in the project is….

Brief background is…

Frequently Asked Questions

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Shipping address:
Doctor’s address:
Would you like to join the clinical trial?
Let us know if you would like to contribute to the research project. We will contact you with more information. There is no obligation - you can decide to join at any time, or you can choose to only receive the plasmalogen supplements.
This field is for validation purposes and should be left unchanged.

ABOUT DR. GOODENOWE

Dr. Goodenowe began his academic training in the late 1980s. In the early 1990s, his academic focus became learning the science of chemistry, biochemistry, and, more specifically, neurochemistry. During his academic tenure, he learned how to design and execute research studies investigating the biochemical mechanisms responsible for various brain diseases. He soon realized that the technology available to investigate human biochemistry could not comprehensively measure all of the biochemicals in blood and cells necessary to determine the biochemical mechanisms of disease. During the course of conducting research into neurodegenerative diseases, Dr. Goodenowe serendipitously became aware of children affected by peroxisomal insufficiencies and is the original inventor and neurochemist behind the current drugs being studied today.