World Pediatric Bone & Joint Day Fundraiser
Monday, October 19th is World Pediatric Bone & Joint day, also known as PB&J Day.
We are working to preserve Sophie’s bones and joints, and those of many other children through the work of Sophie's Neighborhood.
Her high five in the picture at the top represents the $50k we are hoping to raise, with as little as $5 per donation, to save her small joint bones through this effort.
You can help!
1) Make a PB&J sandwich dedicated to the cause, post a pic & tag @sophiesneighborhood, spreading awareness about the org!
2) Donate any amount you can to the fundraiser. As little as $5 will help!
#WorldPediatricBoneAndJointDay #WorldPBJDay #SophiesNeighborhood
The week starting on 10/19 is dedicated to spreading awareness about the impact of musculoskeletal conditions worldwide; rare and common, sudden and progressive - disorders that affect function and mobility, in children.
Sophie's Neighborhood is a nonprofit 501(c)(3) organization dedicated to raising research funding to find a cure, treatment or therapy for a progressively crippling genetic disorder, Multicentric Carpotarsal Osteolysis (MCTO.)
Join us in making a difference as we raise money to benefit Sophie's Neighborhood. Any donation will make an impact.
Meet 3 year old Sophie. She is one of 30 people in the world currently identified with MCTO, a progressively crippling, life-altering genetic disorder that has no treatment or cure. We are fighting for her future. And we need your help.
To date, little is known about the how mutations in MAFB lead to the bone and renal features causing the MCTO phenotype. Our organization was built to fund research that will translate to the most direct path to a therapeutic. It is our hope to seek a new or repurposed treatment that can stop the disease trajectory. Our research will not only benefit MCTO, but is anticipated to help disorders with similar pathways.
Sophie’s “miracle window” - the time in which we have her diagnosis, but her symptoms are not yet severe - is closing, and the time to act is NOW.
What is MCTO?
A rare destructive skeletal disorder affecting the bones of the wrists, feet/ankles, and eventually other joints - elbows, knees, fingers. It creates severe deformities, pain, and loss of use for the areas affected. In individuals without the mutation, the body understands the process breaking down and remodeling bone cells. In Sophie’s case, the mutation only knows destruction or under-development. Most individuals with MCTO also develop kidney function loss, ranging from mild to end stage kidney failure.
Today Sophie is fairly pain-free due to anti-inflammatory medicines, PT and bracing. From a distance you may not know her body is riddled with disease. But, her x-rays show unusual, misshapen bones, and an absence of certain bones you would expect to see by this age. Sophie cannot climb stairs, hop or run. She has trouble gripping items and cannot put pressure on her palms. Progressively over the next decade or more she will become more crippled. She is showing evidence of reduced kidney function. If left untreated, the disease will continue to destroy her body.
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