Family Stories

  • Adam

    Adam

    April 2023

    By Richard Tifone

    "In 2007, when my son, Adam Tifone, was 16, doctors diagnosed him with atypical PKAN.

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  • Madison

    Madison

    February 2020

    "Our daughter, Madison Ruby Greene was diagnosed with BPAN (Beta-propeller Protein-Associated Neurodegeneration, an NBIA Disorder (Neurodegeneration with Brain

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  • Sophia

    Sophia

    February 2020

    "Sophia, who is now 13 years old, had grown tired and frustrated having to endure the 82-mile round

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  • Patricia

    Patricia

    February 2020

    "I just found 6 months ago that I have Neuroferritinopathy (an adult onset NBIA disease). All the symptoms

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  • Clayton

    Clayton

    February 2020

    "Clayton was born in 2017 from Hong Kong. In August 2017, I found that Clayton was slower than

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  • Gráinne

    Gráinne

    February 2020

    "Gráinne is our only child. She is now 10 years old. The first time we suspected anything was

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  • Everett

    Everett

    February 2020

    "Our NBIA story began with a BPAN diagnosis for our oldest son, Everett in 2013. Everett was not

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  • Malachi

    Malachi

    February 2020

    "My son Malachi was born April 28, 2016 he was a happy baby boy. He was cruising around

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  • Elijiah

    Elijiah

    February 2020

    "This is Elijah McBurney. He was diagnosed with BPAN when he was 19 years old. He is now

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  • Naila

    Naila

    February 2020

    "Naila is someone who will love you, no matter who or what you are. And, just in second

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  • Barbara

    Barbara

    February 2020

    "Our daughter Barbara Claire started slowing down at the age of 29. 9 months later she gave birth

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  • Kinsley

    Kinsley

    February 2020

    "Our story began when our daughter was around 7 months of age when she stopped hitting milestones. Our

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  • Kimberly

    Kimberly

    February 2020

    "Kimberly is 33 years old and has idiopathic NBIA. She has been tested for every form of NBIA,

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  • Matias

    Matias

    February 2020

    "My sweet handsome son Matias was diagnosed at age 2 after he regressed and wasn’t able to crawl

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  • Julieta

    Julieta

    February 2020

    "When Julieta arrived in Montevideo, Uruguay on September 24, 2001; I was 23 years old. Her father and

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  • Juliana

    Juliana

    February 2020

    "Juliana is 17 now. She began to have uncontrollable body movements around toddlerhood. We went to many doctors,
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  • Tonja

    Tonja

    February 2020

    "I met Tonja (she has NBIA PKAN) four years ago when she came with her mother to the

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  • Josie

    Josie

    February 2020

    "I was three years old when my sister, Josie, was born. After a year it became clear that

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  • Bhavin

    Bhavin

    February 2020

    "Bhavin (aged 39) was diagnosed with NBIA (PKAN) in 2012. It took us almost two years to give

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  • Lexi

    Lexi

    February 2020

    "Let’s start from the beginning……

    Lexi Fae was born on March 8, 2016. She was a healthy beautiful

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  • Anya

    Anya

    February 2020

    "My name is Alexis and I am a 28-year-old mother of 3 fabulous kids.

    My children are age

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  • Sawyer

    Sawyer

    February 2020

    "Sawyer is a lively, happy one-year old boy that loves nothing more than to snuggle and laugh. Sawyer's

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  • Harper

    Harper

    February 2020

    "This is our beautiful & comedic daughter Harper! She absolutely lights up the room with her infectious smile,
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  • Samantha

    Samantha

    February 2020

    "Samantha is our amazing four-year-old, she is also a rare disease warrior. On July 27, 2017 she was

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  • Jordyn

    Jordyn

    February 2020

    "Jordyn was born on April 18th, 2002. She was four weeks early but was ready to meet her

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  • Sarah

    Sarah

    February 2020

    "My daughter Sarah is 23 years old. She was diagnosed with BPAN on Valentine's Day 3 years ago.

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  • Kinlee

    Kinlee

    February 2020

    "Kinlee will be 4 years old Feb. 27, she is my granddaughter that I have had custody of

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  • Dahlia

    Dahlia

    February 2020

    "Since Dahlia was 8 months old, we were concerned there was something wrong. She was a little floppy,

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  • Dylan

    Dylan

    February 2020

    "Our daughter, Dylan has BPAN, a variation of NBIA (Neuro-degeneration with Brain Iron Accumulation), which is an extremely

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  • Georgia

    Georgia

    February 2020

    "Georgia is our beautiful daughter who was recently diagnosed with Beta Propeller Protein Associated Neurodegeneration (BPAN). She is

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  • Logan

    Logan

    This is the story of Logan and his family... learning and living with a diagnosis of an NBIA disorder.

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  • Josie

    Josie

    Watch one family's story of a diagnosis of NBIA - INAD to becoming involved in the NBIA community.

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  • The story of a newly diagnosed NBIA family

    The story of a newly diagnosed NBIA family

    This short video provides valuable information about the NBIA Disorders Association network

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  • Jonathan

    Jonathan Stretter’s Story of Move from California to Massachusetts

    - Article by Jonathan Stretter and family

    Mid-July 2013 - Things are changing around here. There are a lot of empty boxes

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  • Carter

    Brother, sister cope with NBIA as active, happy young adults

    - By Melissa Carter. May 29, 2013.

    Looking back, there were signs that my brother, Brian, and I were heading to

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  • Stromsta

    He had a purpose and you have hope

    - By Pam Stromsta. November, 2012.

    Sept. 14 marked the fifth anniversary of our son's passing. Had he lived, Kenny would have

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  • Leap

    Family makes it personal for Canadian pharmaceutical company

    - By Sandy Leap. July 26, 2012.
    Many NBIA families, like mine, are eagerly awaiting a trial of the iron chelation

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  • Lamos

    At long last, my family has a big piece of the puzzle

      - By Cheryl Lamos. July 25, 2012.

    I was surprised one day about eight months ago when NBIA geneticist Allison

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  • Cameron

    Cameron Meade’s lasting gift: teaching others about NBIA

    - By Jann Nestell. November 4, 2010

    When Cameron Meade was in the hospital struggling with dystonic movements in 2009, his

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