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Meet Logan Pacl, a Teen With Sanfilippo Syndrome, aka 'Childhood Alzheimer's'

In 2010, Noelle Pacl and her family learned what Logan’s condition was, which is also known as ‘childhood Alzheimer's.' Like many others, they were unsure of the specifics and what it meant. ....

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Bremerton mom takes to Tiktok to raise awareness about her son's terminal disease

Sanfilippo syndrome is a terminal MPS disorder. Bremerton mom Noelle Pacl is raising awareness about the disease just in time for National MPS awareness day. ....

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Silverdale mom uses TikTok to bring awareness to her son's rare disease

Silverdale mom uses TikTok to bring awareness to her son s rare disease
13-year-old Logan has Sanfilippo Syndrome, and his mom shares their life on TikTok in hopes that more awareness will bring a cure. #newdaynw
Author: Suzie Wiley, New Day Northwest
Published: 12:10 PM PDT May 13, 2021
Updated: 12:30 PM PDT May 13, 2021
SEATTLE Silverdale mom Noelle Pacl is a rockstar in our minds. Her son Logan has a rare and fatal disease called MPS III also known as Sanfilippo Syndrome. Sanfilippo Syndrome has no treatment or cure. The life expectancy for Sanfilippo Syndrome is mid to late teens. Logan is 13 years old and doing amazing. ....

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New bill would protect service members with disabled family members from additional housing costs

By ROSE L. THAYER | STARS AND STRIPES Published: April 16, 2021
AUSTIN, Texas – Army spouse Brittney Fourtner has trouble moving around after multiple back surgeries and found the carpet in her Fort Bragg, N.C., home especially difficult to navigate.
For eight months after moving in, she requested the housing office remove it. Then in August, she tripped on it, fell and broke her back.
After her injury, the company sent workers to fix the carpet. They used duct tape and told Fourtner if she wanted the carpet removed, it would cost her about $8,000.
A House bill introduced last week attempts to clarify that private companies leasing to military families on bases cannot charge for needed upgrades to meet a resident’s disability. ....

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First bill by Rep. Stephanie Bice addresses military housing upgrades for disabled residents

First bill by Rep. Stephanie Bice addresses military housing upgrades for disabled residents
Chris Casteel, Oklahoman
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Rep. Stephanie Bice introduced bipartisan legislation on Thursday to ensure residents of military housing don’t have to pay for upgrades necessary to accommodate disabilities.
Bice, R-Oklahoma City, a member of the Armed Services Committee, said, “Military families endure enough stress and financial strain without having to bear the burden for required upgrades to housing provided by the military for a disabled family member.”
© DOUG HOKE/THE OKLAHOMAN
U.S. Rep. Stephanie Bice at The Oklahoman studio, Thursday, April 8, 2021.
The freshman lawmaker’s first bill was coauthored with Rep. Sara Jacobs, a California Democrat who also serves on the Armed Services Committee. ....

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