Unveiling the Stories of Strength
Welcome to our News & Media Hub, your go-to source for the latest updates, inspiring stories, and valuable resources related to Niemann-Pick Disease Type C (NPC). Here, we strive to keep you informed, connected, and inspired as we navigate the journey together.
WWBT NBC12
Published: Apr. 25, 2024 at 5:52 PM EDT
CHESTERFIELD, Va. (WWBT) - A Chesterfield girl has a rare disease that is slowly taking away all of her abilities.
It’s similar to dementia and could kill her. While there’s no official cure, there’s a trial drug that her family believes can help her.
Watch her family’s fight in this week’s RVA Parenting:
That's Life Magazine Australia
Brave Abby Diagnosed with Dementia at 4 Years Old
NY Breaking
Virginia Girl, 8, Is Suffering ‘Childhood Dementia’ As Her Body Slowly Shuts Down From Rare Terminal Neurological Illness That’s Been Crippling Her Body Since She Was Just Three Months Old
By James ON DEC 4, 2023
Patient Worthy
Rare Community Profiles: The Urgent Need for a Cure for Niemann-Pick Type C: Two Parents Share Their Perspectives
DailyMail
Virginia girl, 8, is suffering 'childhood dementia' as her body slowly shuts down from rare terminal neurological illness that's been crippling her body since she was just three months old Abby Alvey was diagnosed with Niemann Pick Type C at the age of four Niemann Pick Type C is an ultra-rare genetic disease that attacks the nervous system and causes both physical and neurological symptoms
It is unclear how long Abby will live, but her and her family plan to make the most of it
By EMMA RICHTER FOR DAILYMAIL.COM
PUBLISHED: 18:05 GMT, 4 December 2023 | UPDATED: 21:55 GMT, 4 December 2023
WTVR Channel 6 Richmond
Parents of Virginia girl with terminal childhood dementia vow to 'live a lifetime' in a short time
Garland Alvey: 'We go and do as much as we can... We are not going to just hide and give up'
By: Maggi Marshall
Posted at 5:56 PM, Dec 02, 2023 and last updated 7:07 AM, Dec 03, 2023
WTVR Channel 6 Richmond
Tea parties will benefit 'superhero' Virginia girl with terminal childhood dementia
'It’s just been really incredible... It has helped me know I’m going in the right direction.'
WENY News
Monday, December 18th 2023, 11:24 PM EST
Updated: Tuesday, December 19th 2023, 9:22 AM EST
The goal of Campaign One at a Time is to support children fighting life threatening illnesses.
Local 12/WKRC-TV
8-year-old Abby Alvey was diagnosed with a rare disease that resulted in her developing childhood dementia.
Now, her family is doing all they can to make her life as enjoyable as possible.
https://tinyurl.com/3nru7h24
Erie News Now
Monday, December 18th 2023, 11:24 PM EST
Updated: Tuesday, December 19th 2023, 9:22 AM EST
The goal of Campaign One at a Time is to support children fighting life threatening illnesses.
Wis 10
Family of girl, 8, with terminal illness vows to ‘live a lifetime’ in a short time
By WTVR via CNN Newsource
Published: Dec. 3, 2023 at 4:56 PM GMT+8
16 News Now
Family of girl, 8, with terminal illness vows to ‘live a lifetime’ in a short time
By WTVR via CNN Newsource
Published: Dec. 3, 2023 at 3:56 AM EST
15 WMTV
Family of girl, 8, with terminal illness vows to ‘live a lifetime’ in a short time
By WTVR via CNN Newsource
Published: Dec. 3, 2023 at 4:56 PM GMT+8
BNN Breaking News
Abby Alvey: An Eight-Year-Old's Battle with 'Childhood Dementia'
By Saboor Bayat
04 Dec 2023 13:44 EST