Media Attention

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Daily Mail.com

January 4, 2018
Boy, 3, desperately needs a cure after being diagnosed with 'ultra-rare' brain disease that only affects 20 people in the world
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Austin American-Statesman

December 28, 2017
Georgetown child is first in Texas diagnosed with 'ultra-rare' disease
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Bored Panda

December 18, 2017
My Toddler Daughter And Her Bff Are Fighting The Same Ultra-Rare Disease And Have Been Given An Incredible Gift This Holiday Season!
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FOX 25 News

December 12, 2017
Angel donor vows to match donations for rare genetic disorder research
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Genome Magazine

November 16, 2017
Extreme Parenting: How the mothers and fathers of children with ultra rare disorders spearhead their own support and research strategies.
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Boston Globe

November 10, 2017
For players and an ill child, making something out of nothing
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Wicked Local: Newburyport

October 18, 2017
Good Sports: Newburyport High School athletes spend time helping others
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Newburyport Daily News

October 10, 2017
PLAYING WITH A PURPOSE
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CBS Philly

September 12, 2017
Hundreds Turn Out To Raise Funds For Girl, 3, Battling Rare Disease
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NBC Boston

May 18, 2017
Special Books by Special Kids, by Phil Lipof
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Boston Children's Hospital Science and Clinical Innovation Blog

April 12, 2017
SPG47: When rare disease research gets a push from parents, by Kasey Edwards
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Seattle Children's Hospital blog

March 7, 2017
The Comfort of a Diagnosis and Knowing You Are Not Alone, by Mike Stuart
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The Mighty

March 2, 2017
Why I'm Choosing Happiness When Facing My Daughter's Ultra-Rare Disorder, by Kasey Edwards
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Inside Edition

January 11, 2017
2 Children With Rare Disease Who Live 300 Miles Apart Finally Meet for Special Playdate, by Inside Edition
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KVUE

January 11, 2017
Genetic testing reveals rare brain disorder for Georgetown boy, 2, by Jenni Lee
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Little Things

January 10, 2017
Mom Discovers 3-Year-Olds Share Rare Disease That Affects Only 11 Kids In The World
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Boston Children's Hospital

December 20, 2016
Stronger together: Families of girls with SPG47 find support in each other
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WPVI-TV Philadelphia

December 17, 2016
2 toddlers with rare disease form friendship in their fight for cure, By Jeff Chirico
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WCVB Channel 5 News

December 13, 2016
Newburyport family fights daughter's rare disease: 3-year-old Robbie one of just 11 known cases in world
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PEOPLE Magazine

December 7, 2016 web / December 12, 2016 print
As 2 little girls fight a disabling disease affecting only 11 known people worldwide, their families look for answers together, by Rose Minutaglio
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93.3 WMMR's Preston & Steve Show

December 8, 2016
Our friends at the Preston & Steve Show on 93.3 WMMR in Philadelphia graciously offered to help spread the word about Cure SPG47.
Click here for the article.