Family Stories Adam April 2023 By Richard Tifone "In 2007, when my son, Adam Tifone, was 16, doctors diagnosed him with atypical PKAN.… Read More Madison February 2020 "Our daughter, Madison Ruby Greene was diagnosed with BPAN (Beta-propeller Protein-Associated Neurodegeneration, an NBIA Disorder (Neurodegeneration with Brain… Read More Sophia February 2020 "Sophia, who is now 13 years old, had grown tired and frustrated having to endure the 82-mile round… Read More Patricia February 2020 "I just found 6 months ago that I have Neuroferritinopathy (an adult onset NBIA disease). All the symptoms… Read More Clayton February 2020 "Clayton was born in 2017 from Hong Kong. In August 2017, I found that Clayton was slower than… Read More Gráinne February 2020 "Gráinne is our only child. She is now 10 years old. The first time we suspected anything was… Read More Everett February 2020 "Our NBIA story began with a BPAN diagnosis for our oldest son, Everett in 2013. Everett was not… Read More Malachi February 2020 "My son Malachi was born April 28, 2016 he was a happy baby boy. He was cruising around… Read More Elijiah February 2020 "This is Elijah McBurney. He was diagnosed with BPAN when he was 19 years old. He is now… Read More Naila February 2020 "Naila is someone who will love you, no matter who or what you are. And, just in second… Read More Barbara February 2020 "Our daughter Barbara Claire started slowing down at the age of 29. 9 months later she gave birth… Read More Kinsley February 2020 "Our story began when our daughter was around 7 months of age when she stopped hitting milestones. Our… Read More Kimberly February 2020 "Kimberly is 33 years old and has idiopathic NBIA. She has been tested for every form of NBIA,… Read More Matias February 2020 "My sweet handsome son Matias was diagnosed at age 2 after he regressed and wasn’t able to crawl… Read More Julieta February 2020 "When Julieta arrived in Montevideo, Uruguay on September 24, 2001; I was 23 years old. Her father and… Read More Juliana February 2020 "Juliana is 17 now. She began to have uncontrollable body movements around toddlerhood. We went to many doctors,… Read More Tonja February 2020 "I met Tonja (she has NBIA PKAN) four years ago when she came with her mother to the… Read More Josie February 2020 "I was three years old when my sister, Josie, was born. After a year it became clear that… Read More Bhavin February 2020 "Bhavin (aged 39) was diagnosed with NBIA (PKAN) in 2012. It took us almost two years to give… Read More Lexi February 2020 "Let’s start from the beginning…… Lexi Fae was born on March 8, 2016. She was a healthy beautiful… Read More Anya February 2020 "My name is Alexis and I am a 28-year-old mother of 3 fabulous kids. My children are age… Read More Sawyer February 2020 "Sawyer is a lively, happy one-year old boy that loves nothing more than to snuggle and laugh. Sawyer's… Read More Harper February 2020 "This is our beautiful & comedic daughter Harper! She absolutely lights up the room with her infectious smile,… Read More Samantha February 2020 "Samantha is our amazing four-year-old, she is also a rare disease warrior. On July 27, 2017 she was… Read More Jordyn February 2020 "Jordyn was born on April 18th, 2002. She was four weeks early but was ready to meet her… Read More Sarah February 2020 "My daughter Sarah is 23 years old. She was diagnosed with BPAN on Valentine's Day 3 years ago.… Read More Kinlee February 2020 "Kinlee will be 4 years old Feb. 27, she is my granddaughter that I have had custody of… Read More Dahlia February 2020 "Since Dahlia was 8 months old, we were concerned there was something wrong. She was a little floppy,… Read More Dylan February 2020 "Our daughter, Dylan has BPAN, a variation of NBIA (Neuro-degeneration with Brain Iron Accumulation), which is an extremely… Read More Georgia February 2020 "Georgia is our beautiful daughter who was recently diagnosed with Beta Propeller Protein Associated Neurodegeneration (BPAN). She is… Read More Logan This is the story of Logan and his family... learning and living with a diagnosis of an NBIA disorder. Read More Josie Watch one family's story of a diagnosis of NBIA - INAD to becoming involved in the NBIA community. Read More The story of a newly diagnosed NBIA family This short video provides valuable information about the NBIA Disorders Association network Read More 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… Read More 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… Read More 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… Read More 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… Read More 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… Read More 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… Read More
