Anna Sowa
Read anna's bio
Read Anastasia's Bio
CurePDE is not just a
foundation. Together, we can
bring about positive change and
ensure that no one facing PDE
walks this path alone.
CurePDE is not just a foundation. Together, we can bring about positive change and ensure that no one facing PDE walks
this path alone.
Meet our team
Title
Cheif mission officer
Anastasia Popova
Cure pde founder
Anastasia Popova
Read anastasia's full bio
Read Anastasia's Bio
CurePDE is not just a
foundation. Together, we can
bring about positive change and
ensure that no one facing PDE
walks this path alone.
CurePDE is not just a foundation. Together, we can bring about positive change and ensure that no one facing PDE walks
this path alone.
Meet our team
Title
Cure pde founder
My name is Anastasia, and I am the founder of CurePDE. I am deeply passionate about making a meaningful difference in the lives of individuals affected by Pyridoxine-Dependent Epilepsy (PDE). My journey began with a personal and heart-wrenching experience that forever changed the course of my life. It was a journey marked by fear, uncertainty, terror, and devastation, one that no parent should ever have to endure.
My name is Anastasia, and I am the founder of CurePDE. I am deeply passionate about making a meaningful difference in the lives of individuals affected by Pyridoxine-Dependent Epilepsy (PDE). My journey began with a personal and heart-wrenching experience that forever changed the course of my life. It was a journey marked by fear, uncertainty, terror, and devastation, one that no parent should ever have to endure.
When we first encountered PDE, there was an overwhelming sense of isolation. There was no one to reach out to, and it felt like we were navigating uncharted waters. There was no readily available information to guide us, no one to turn to for support, and no established community to lean on.
However, our lives took a transformative turn when we crossed paths with Dr. Lerner from UCLA. Dr. Lerner's expertise and dedication illuminated our path, providing us with hope and clarity in the midst of our darkest days. It was this pivotal moment that fueled my determination to create CurePDE—a foundation committed to changing the trajectory of PDE for individuals and families worldwide.
One of the driving forces behind CurePDE is our recognition of the fragmented nature of existing data, particularly concerning adults living with PDE. We understand the urgency of bridging these knowledge gaps and fostering collaboration among researchers to advance our understanding of this complex condition.
But our mission extends beyond academia. CurePDE aims to be a place where families can find solace, support, and a sense of belonging. We believe in the power of community and the sharing of real-life experiences. It's about shedding light on PDE from a less academic perspective, offering a place where uplifting and reassuring stories are shared, and where bonds are formed among those who have been on a similar journey.
Our vision for this community is to provide a platform that encompasses the full spectrum of stories and connections. From the highs to the lows, the challenges to the triumphs, we want to ensure that everyone touched by PDE finds a place where they can connect, learn, and grow together.
CurePDE is not just a foundation. Together, we can bring about positive change and ensure that no one facing PDE walks this path alone.
Anastasia Popova
Cure pde founder
Read more about anastasia and andre's story
Anna Sowa
Read anna's full bio
Read Anastasia's Bio
CurePDE is not just a
foundation. Together, we can
bring about positive change and
ensure that no one facing PDE
walks this path alone.
Title
Chief Mission Officer
I am Anna, and I am the Chief Mission Officer of CurePDE. My journey closely follows that of my sister, with a commitment to rare diseases and genetics, coupled with a determined aspiration to effect substantive change.
I am Anna, and I am the Chief Mission Officer of CurePDE. My journey closely follows that of my sister, with a commitment to rare diseases and genetics, coupled with a determined aspiration to effect substantive change.
My academic journey led me to pursue a Ph.D. with a specialized focus on neurodegenerative diseases. This educational pursuit enabled me to delve deeply into the intricate workings of the human nervous system, providing me with profound insights into the challenges faced by individuals affected by conditions like PDE.
Subsequently, my postdoctoral research in immunology broadened my horizons significantly. It allowed me to explore the intricate interplay between the body's immune system and neurological disorders, shedding new light on our understanding of these conditions. This multidisciplinary expertise has proven to be invaluable in shaping CurePDE's holistic approach to discussing rare disease.
At present, I find myself at the juncture of science, technology, and ethics—an intersection where pioneering research converges with cutting-edge technology, all while remaining grounded in ethical considerations. My overarching goal is to provide a scientific perspective that not only informs but also inspires engagement. I have a deep appreciation for simplifying complex scientific concepts, making them accessible to a wider audience, and fostering enthusiasm for scientific exploration.
Our aim is to cultivate a community that offers support while also advancing our understanding of PDE. My role ensures that we maintain an engaging, and scientifically rigorous approach as we work together to make a meaningful impact in the realm of rare diseases and genetics.
Anna Sowa
Chief Mission Officer
Jeffrey Wilens
Read their Bio
CurePDE is not just a foundation. Together, we can bring about positive change and ensure that no one facing PDE walks
this path alone.
Title
Chief Financial Officer
Serguei and Taissia Popova
scientists and researchers
Serguei and Taissia Popova
Read their full bio
Read Anastasia's Bio
CurePDE is not just a
foundation. Together, we can
bring about positive change and
ensure that no one facing PDE
walks this path alone.
Title
Cure pde founder
Serguei and Taissia Popova, are loving parents of Anastasia and Anna, and doting grandparents to Andre (and their three other grandchildren Jenny, Alexander, and Benjamin). As both devoted scientists and researchers, they have been a source of support for their family and a driving force behind the quest for answers in the face of Pyridoxine-Dependent Epilepsy (PDE).
Serguei and Taissia Popova, are loving parents of Anastasia and Anna, and doting grandparents to Andre (and their three other grandchildren Jenny, Alexander, and Benjamin). As both devoted scientists and researchers, they have been a source of support for their family and a driving force behind the quest for answers in the face of Pyridoxine-Dependent Epilepsy (PDE).
Serguei and Taissia have been by Andre's side from the very beginning of his journey, committed to understanding and addressing the challenges posed by PDE. With a deep-rooted appreciation for scientific progress, they have dedicated countless hours to studying the scientific literature on PDE, aiming to uncover solutions that can make a difference.
Their invaluable expertise and unwavering determination are now channeled towards supporting CurePDE in its mission to bring hope, awareness, and change to the PDE community. Serguei and Taissia are enthusiastic about contributing their scientific insights to advance research and knowledge, all in the name of enhancing the lives of individuals affected by PDE.
We are immensely grateful to have Serguei and Taissia Popova as cherished members of the CurePDE family, and their commitment to scientific excellence serves as a beacon of hope for the future. Together, we strive to unlock the mysteries of PDE and make a lasting impact.
Serguei and Taissia Popova
SCIENTISTS AND RESEARCHERS
Jeffrey Wilens
Read Anastasia's Bio
CurePDE is not just a
foundation. Together, we can
bring about positive change and
ensure that no one facing PDE
walks this path alone.
Title
Chief Financial Officer
Defining Pyridoxine-Dependent Epilepsy & The Role of Pyridoxine (Vitamin B6)
PDE is usually manageable. The primary and most effective current first line of therapy for PDE is pyridoxine (B6) supplementation.
Treatment
Seizures
Diagnosis
Pyridoxine-Dependent Epilepsy, often abbreviated as PDE, is an extremely rare genetic disorder that affects the brain's electrical activity, leading to seizures. This condition is classified as an inborn error of metabolism, meaning it is present from birth due to a genetic mutation.
The key player in PDE therapy is pyridoxine, also known as vitamin B6. Pyridoxine plays a vital role in various metabolic processes in the body, including the synthesis of neurotransmitters in the brain. In individuals with PDE, a specific genetic mutation in a gene commonly referred to as antiquitin (ATQ) which contributes to a number of biological pathways which we will discuss later, but effectively forces the reduction of B6 in the system. It is important to note that PDE is not the only epilepsy that responds to vitamin B6 treatment.
The deficiency of pyridoxine in PDE patients can result in recurrent seizures, which typically start in the first few days or weeks of life.
Diagnosing PDE often involves a combination of clinical observations, genetic testing, and specialized metabolic testing.
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