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Greek-American Father Starts Awareness Campaign for Daughter’s Rare Illness

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“Rare Adventures,” the coloring book created by John Anastasiades to help in the understanding of his daughter’s rare illness. Courtesy John Anastasiades

Greek-American John Anastasiadis of Massachusetts has created a new coloring book called “Rare Adventures” as a way to raise awareness and enhance the understanding of his daughter’s rare illness, BPAN, as well as raise funds for research and treatment.

He and his wife Panayiota are the parents of a nine-year-old daughter, Kyriaki “Kyki” Anastasiadis, who suffers from a rare disease called BPAN, or Beta-Propeller Protein-Associated Neurodegeneration, which has only 500 known cases globally. As Anastasiadis says, the hunt to discover this disease and its diagnosis took several years as well as tremendous willpower and patience.

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In the United States, a rare disease is defined as one that affects 200,000 or fewer people; but, undaunted by these statistics, Anastasiadis states “In our case, difficult times have called for creative measures.”

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A depiction of the researchers at Oregon Health Science university who are working on BPAN. Courtesy John Anastasiadis.

One way of raising the monies needed is through this unique coloring book, dedicated to the superheroes who fight their way through life with this disease and the medical personnel who treat them and who are portrayed as heroes as well.

Rare Adventures, the only such coloring book in the world, is currently selling online, at Anastasiadis’ website, here. Nothing like this book exists on the market, he assures Greek Reporter in an interview.

Kyki was diagnosed with BPAN when she was just three years old; she is now one of fewer than 500 people worldwide who are living with the disease, which is a genetic disorder of the broader NBIA spectrum. Children with BPAN have developmental delays, little to no speech, seizures, and sleep disorders and make slow cognitive gains.

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Kyki Anastasiadis. Courtesy John Anastasiadis.

Kyki’s condition is “de novo,” which means it was an unlucky mutation of her genes. In this case, BPAN is a result of a genetic misspelling in the WDR45 gene.

Most of the children with BPAN have unsteady, staggering movements and many cannot walk.

When they reach adolescence or early adulthood they are faced with a devastating sudden onset of regression and develop progressive Parkinsonism, cognitive decline, and dementia, according to Anastasiadis. Most do not live past middle age.

Rare Adventures coloring book part of finding treatment, cure for BPAN

Since BPAN is so rare, pharmaceutical companies simply do not invest in developing treatments and government agencies generally provide little support for rare disease research.

However, the loving and dedicated father of beautiful Kyki says “We are determined to find treatment and a cure!”

The team at Boston Children’s Hospital has been treating Kyki, Anastasiadis relates, but as he says, “The challenge is getting pharmaceutical companies interested in orphan diseases. The underlying root cause is associated with the ‘autophagy’ process that happens in our cells. Fortunately, that is also an issue with Parkinson’s, so maybe something from Parkinson’s research will end up benefiting those with BPAN.”

The researchers who first discovered BPAN are based in Portland, Oregon at the Oregon Health & Science University. While they are currently conducting a natural history study on the disease, Anastasiadis shared with Greek Reporter that he illustrated those very researchers in his new coloring book.

They are just some of the many doctors and scientists across the globe who are working toward treatments for BPAN and there is hope, he says, that progress can be made during Kyki’s lifetime.

The new coloring book dedicated to his daughter depicts children with rare diseases and disorders as the superheroes that they are and highlights their thoughts, hopes, and power in a fresh way, according to Anastasiades. It even gives children the chance to draw themselves as superheroes!

Anastasiadis says “Through our journey, my wife Panayiota and I realized what it means to be a part of a special needs community. We want the world to know that children and adults with special needs also dream, smile, laugh and want to be included, and we want to teach ‘normal’ children empathy and compassion for children with rare diseases.”

Panayiota was Anastasiadis’ sounding board and helped him think through some of the scenes and ideas, he tells Greek Reporter.

The couple has two other children, Kosta and Antigone.

Anastasiadis does have a background in art and has worked as an industrial designer for most of his career, having attended Pratt Institute for his Bachelors in Industrial Design. He is currently working in the medical device industry, designing and developing surgical devices and systems.

He adds that “The book was created as a fundraiser for BPAN research, and all proceeds will be directed to this end.”

You can learn more about BPAN here. You can also learn more about the brilliant researchers exploring this disease here.

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