RCDP Project

Real stories of the life changing impact of plasmalogens

Dr. Dayan Goodenowe’s dedication to understanding and treating plasmalogen deficiencies has led to significant advancements in RCDP treatment, mainly through plasmalogen restoration therapy.

This innovative approach has profoundly impacted the lives of children like Thatcher and Nova, both of whom have non-classic RCDP. Seven-year-old Thatcher experienced remarkable improvements in mobility and heart function, overall health and quality of life while Nova, diagnosed with RCDP at 18 months, showed rapid developmental progress after starting the therapy. Her ability to walk more stably, improved balance, enhanced eye contact, and increased engagement with her environment and family are testaments to the therapy’s potential. These cases underline the transformative power of plasmalogen restoration in improving the quality of life for RCDP patients, offering new hope and possibilities.

Thatcher's Story

Meet Thatcher—a resilient seven-year-old boy who was diagnosed with non-classic RCDP in 2021.

Faced with challenges like limited mobility, seizures, and developmental delays, Thatcher and his family embarked on a transformative path under the guidance of Dr. Dayan Goodenowe.

Through plasmalogen restoration therapy, Thatcher has achieved milestones once thought unattainable: participating in school activities, engaging in interactive play, and expressing affection with improved eye contact and physical touch. His story is a testament to the power of innovative treatments and unwavering familial support.

Nova's Story

Nova is one of just thirteen known cases of RCDP (Rhizomelic Chondrodysplasia Punctata) in the United States.

Her family was told there was no cure. That her life expectancy would be short. That palliative care was the only option. But they refused to accept that as the end of the story. Their unwavering determination and belief in possibilities beyond the diagnosis have turned what was considered a medically hopeless situation into one filled with life, progress, and purpose. They are a living reminder: with love, resilience, and hope—anything is possible.

More than just research

If you’re a parent seeking information on plasmalogen restoration for a child with RCDP, or if you wish to connect with other parents like Nicole (Thatcher’s Mom) or Maddilynn (Nova’s Mom) who are currently navigating this journey, please reach out. Our family support group provides a platform to share experiences, challenges, and achievements, fostering a supportive network for anyone dealing with RCDP.

We also welcome individuals interested in neurodevelopmental disorders and plasmalogen research. Join our community to contribute to the growing understanding and treatment of these complex conditions.

Please reach out to our team, and we can connect you.

Send us an email: infojapan@drgoodenowe.com or join our Facebook support group: Pediatric Plasmalogen Deficiencies and Related Disorders Recovery Group

To learn more about plasmalogen restoration, research related questions or inquiries, please contact us at infojapan@drgoodenowe.com

What are Plasmalogens?

Plasmalogens are a unique type of glycerophospholipid, crucial for various cellular functions in our body.
Essential for life, these molecules form the building blocks of cellular membranes, creating barriers like the walls of an apartment, separating and compartmentalizing different cellular components and organelles.
While we can obtain most glycerophospholipids from our diet, plasmalogens are an exception. They are primarily synthesized in peroxisomes, a specialized organelle present in almost all body cells. They are less stable outside the body, often breaking down in the stomach’s acidic environment.
Plasmalogens play a vital role in brain and nerve function. A deficiency in these lipids is affecting the myelination process and brain development. Addressing this deficiency through targeted therapies can lead to marked improvements in health and development.