Today is Rare Disease Day—2025! At GladGirl, we’re proud to stand alongside families affected by rare disorders, raising awareness and supporting critical research. This year, we’re donating 10% of all sales today to the NBIA Disorders Association, helping to fund research, provide support, and raise awareness for ultra-rare conditions like BPAN.
Rare diseases affect over 300 million people worldwide, yet many remain largely unknown. One of these is NBIA (Neurodegeneration with Brain Iron Accumulation), a group of devastating genetic disorders that progressively impair movement, cognition, and overall quality of life. Within NBIA, there are 11 known subtypes, including BPAN (Beta-propeller Protein-Associated Neurodegeneration), the disorder affecting Madison Greene—the inspiration behind our initiative today. Maddie is the daughter of GladGirl co-founder Brian Greene and the granddaughter of GladGirl co-founder Esther Bolkin, making this cause deeply personal for our GladGirl family.
BPAN is an ultra-rare genetic disorder affecting an estimated 2-3 per million people worldwide. It follows a two-phase progression, beginning in childhood with intellectual disabilities, seizures, sleep disturbances, and autistic-like behaviors. Then, in adulthood, the disorder takes a devastating turn, leading to Parkinson’s-like symptoms and dementia—slowly erasing the hard-earned skills these individuals have fought to develop.
There is no cure for BPAN or any NBIA disorder—yet. But there is hope. The NBIA Disorders Association has been at the forefront of groundbreaking research, funding over $2.4 million in studies that have led to the discovery of many NBIA-related genes. Their mission? To push forward the search for effective treatments and, ultimately, a cure.
Today, every purchase at GladGirl makes a difference. We are donating 10% of all sales today to NBIA Disorders Association, helping to accelerate research and provide much-needed support to families facing these life-altering conditions.
Want to do more? Customers can also donate directly on our website. Every contribution—whether $5 or $500—helps fuel the fight against NBIA and brings us closer to life-changing breakthroughs.
Rare diseases are often represented by zebras because, in medical training, doctors are taught, “When you hear hoofbeats, think horses, not zebras.” This means that common conditions are considered first, leaving many rare diseases misdiagnosed or overlooked for years. But today, we shine a light on the zebras—those living with rare diseases—because their stories matter.
By shopping with GladGirl today, following NBIA Disorders Association, and sharing Maddie’s story, you are helping to shed light on a small but mighty community fighting for recognition, research, and hope.
Maddie and I thank you from the bottom of our hearts for supporting this cause. Let’s work together to bring change, one step at a time.
#RareDiseaseDay #GladGirlCares #SupportNBIA #BPANAwareness
To learn more about NBIA and how you can help, visit: www.nbiadisorders.org
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