D.C. Family Leads Fight Against Rare Childhood Disease INAD
A Washington, D.C., family is making a powerful stand. They are fighting for their son Michael, who lives with a rare and severe genetic disorder. The condition is called Infantile Neuroaxonal Dystrophy, or INAD. This disease is progressive and currently has no cure. Michael’s parents, Adam and Laura Nardone, are leading global efforts. They aim to find treatment and support for children affected by INAD.
The Diagnosis: A Life-Altering Moment
Michael Nardone was a healthy baby. However, at around 18 months old, his parents noticed changes. Michael started losing motor skills. He struggled with walking and balance. Doctors initially could not find a cause. After extensive testing, Michael received an INAD diagnosis. This news was devastating for the Nardone family. INAD is a neurodegenerative disease. It causes nerve damage throughout the body. Children with INAD progressively lose abilities. They often do not live past early childhood.
Understanding Infantile Neuroaxonal Dystrophy (INAD)
INAD is an ultra-rare genetic condition. It affects the nervous system. The disease impacts the brain and other parts of the body. It damages the axons, which are nerve fibers. This damage stops communication between nerves. Symptoms include developmental regression. Children lose speech, mobility, and cognitive functions. It can also lead to seizures and vision problems. Currently, only about 100 cases are known worldwide. Research into this devastating condition is vital.
The INADcure Foundation: A Parent’s Mission
Faced with a lack of treatment options, the Nardones took action. They founded the INADcure Foundation. This non-profit organization works tirelessly. Its mission is to fund research for INAD. They support scientific studies and potential clinical trials. Adam and Laura are now dedicated advocates. They speak about the urgent need for INAD research. Their goal is to accelerate the search for a cure. They hope to improve the quality of life for all INAD children.
Hope Through Research and Clinical Trials
The foundation actively raises money. These funds directly support medical breakthroughs. Scientists are exploring various treatment approaches. These include gene therapy and drug repurposing. Clinical trials are also being developed. These trials offer a path to potential new therapies. The Nardones believe in the power of science. They are hopeful that a treatment can be found. This would offer relief and a future for children like Michael.
Community Support and Awareness
The Nardone family shares their story widely. They seek to raise public awareness about INAD. Increased awareness can lead to more donations. It also helps attract more researchers. Support from the community is essential. Every contribution helps fund critical research. This vital work aims to change the lives of affected families. The Nardones continue their fight with unwavering determination. They remain a beacon of hope for the rare disease community.
