My 8-year-old daughter is currently battling Niemann Pick Disease Type C (NPC), a rare, incurable, and terminal neurodegenerative disorder. I am writing this petition with a heavy heart and a sense of urgency to bring attention to the urgent need for NPC to be included in the Virginia Newborn Screening Panel.

NPC is a devastating condition that causes childhood dementia and a range of debilitating issues due to the body's inability to transport certain molecules within cells. The diagnostic journey for NPC is long and dangerous, often leading to misdiagnoses that can result in irreversible neurological damage. Early detection through newborn screening could significantly improve the chances of longer-term survival for affected children.

I implore you all to support this petition as it not only affects my daughter but also numerous other families across Virginia who are silently suffering from this cruel disease. By adding NPC screening to the Virginia Newborn Screening Panel, we can provide hope for early intervention and potentially life-saving treatments.

Here are some relevant facts about NPC:

1. Prevalence: Although considered rare, studies estimate that approximately 1 in every 100,000 live births may be affected by NPC worldwide.
(Source: National Institute of Neurological Disorders and Stroke)

2. Symptoms: NPC primarily affects neurological function but can also impact other organs such as the liver or spleen. Common symptoms include loss of speech, cognitive decline, motor difficulties (such as impaired coordination), seizures, difficulty swallowing or eating properly.
(Source: National Organization for Rare Disorders)

3. Experimental Treatments: While there is currently no cure for NPC, certain experimental treatments have shown promise in slowing down its progression and improving quality of life.
(Source: National Niemann-Pick Disease Foundation)

By including screening for Niemann Pick Disease Type A,B,and C in the Virginia Newborn Screening Panel, we can ensure that affected infants are identified early, allowing for timely medical interventions and access to potential treatments. This will not only alleviate the suffering of these children but also provide their families with a glimmer of hope during an incredibly challenging time.

I urge you to consider the impact this decision could have on countless lives within our state. Let us come together as a community and advocate for change that will make a tangible difference in the lives of those affected by NPC.

Please sign this petition and join me in urging the Virginia Department of Health to add Niemann Pick Disease Type A, B, and C to the Virginia Newborn Screening Panel. Together, we can bring about positive change and improve outcomes for future generations.

Thank you for your support.

Garland, Melissa, Claire and Abby Alvey

#abbystrong