Ambassador Stories
 • 
February 8, 2023

I Advocate Not Only For Melissa, But For All People With PA

It’s important us PA parents keep using our voices to push for more research.

by Kathy Stagni, as-told-to AllStripes
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Isla sitting in a park on a green slide.
Two women sitting at a table having a conversation
Anna smiling at the camera
Photo shows Quinn standing in the middle of his father and mother, Dana
Large family standing front of a front door.
Chandler smiling and looking directly into the camera

Feeling More Me

November 14, 2022
  
Rare Life
Taylor smiling in a sunflower field.
A young Maria painting on a canvas
Callaway running through a field
Parent and child holding hands
Photo by Heather Avant

‘It was a patient.’

September 20, 2022
  
Craig wears sunglasses on a sidewalk and faces the camera.
Photo shows Bukky with their hands on their chin and cheeks, wearing a pink flower crown.
Sara wears glasses and smiles directly at the camera.
Cars on a busy road with skyscrapers on both sides.
Ikedra looks straight at the camera and smiles.
Stephen with his wife and business partner Michele
Sean looks straight at the camera, smiling.
Jax holds his parents hands and walks on the beach, facing the camera.
Popcorn and a director's slate on a yellow background.
Ken wears glasses and a beanie looks straight at the camera.
Text reads: COVID-19 and You; We asked you to tell us about COVID-19's impact on your healthcare experiences. 731 of you responded. Here's what we learned.
Taylor's dad lies in a bed with a young Taylor. On a tray table between them, Taylor colors.
Two headshots side-by-side: James faces the camera, as does Andrea.
Jamie is behind her son Bradley. Both are smiling into the camera.
A close up image of two people at a table having coffee. Their faces are not visible but we can see their hands and the coffee cups
Many colorful books sit on a white bookshelf
Kristen is smiling directly at the camera, trees behind her.
Thomas is in a black graduation gown, playing a blue and white electric guitar.
Two young men are sitting on top of a car, facing away from the camera, silhouetted in the sunset
Mandy sits in a wheelchair in a hospital room. She's smiling and appears cheerful.
A sign on the side of a brick building reads "How are you, really?"
Sadie, a young child, is held by her dad as her mom looks on lovingly.
Nicole with her husband and their daughter, Gabby, face the camera, with trees in the background.
Michael wears a tie and suit and looks directly at the camera, trees behind him.
Amanda and Jose standing in a forest, facing the camera, with their two children.
Maria, an AllStripes Ambassador, appears in a circular photo on the left. Text to the right reads, "By joining AllStripes, we're empowering ourselves, our stories and our knowledge for both Morquio A & B."
A collage of people from the rare disease community.
Addy wears yellow glasses and a magenta top and smiles at the camera.
A cute smiling baby on a gray chair, surrounded by wooden trains that spell out "Graham." A chalkboard says "July 17, 2014, 4 months."

My Son Graham

March 17, 2022
  
Staff Stories
Julian, Daniel and Keith, all smiling and using wheelchairs.
Claire wears a leather jacket and faces the camera, with the side of her face in her palm.
A man lookings at his cell phone, searchingly.
Teryn wears purple and has her arm around her daughter, Lindy, who holds a photo of Teryn's youngest daughter, Darcee, who passed away from complications of MLD.
A neck-down shot of a doctor with a stethoscope around their neck and a phone in their hands.
Raghavendran wears a blue and purple print shirt and faces the camera.
Elle's headshot: Elle looks straight at the camera, smiling and wearing a pink shirt.
A Black scientist wearing a mask stands at a desk in a lab, working with tools.
Three of Cindy's children are pictured sitting next to each other when they were young, smiling and goofing around.
This is a photo of all four of Liz's children — Tyler, Katie, Faith and Serina — on the beach as young kids.
Jerry smiles and faces the camera. He's wearing a yellow and white shirt and a smile, and there's a piece of art on the wall in the room behind him.
Mackenzie wears a blue shirt with the AllStripes logo (white and red stripes in a boomerang shape) and a smile. She's facing the camera and holding a thick binder.
Lynn wears glasses and earrings. She's facing the camera, with a scene of water, boats and a dock behind her.
Three photos, one of each participant, appear side-by-side: Jon wears glasses and a blazer; Ken wears a beanie, glasses & smile; Olivia has a green shirt on and a smile.
Kelsie appears with her son, Lincoln, who's facing the camera camera and smiling with his finger in his mouth.
Matthew, who is 11, looks directly in the camera with a calm expression. He's wearing a zebra headband and a navy-blue shirt.
A black-and-white headshot of Teonna Woolford, looking straight at the camera with a restaurant in the background.
Bethany is wearing a pink shirt that says "My Voice Is My Superpower," and she's holding two of her children.
Leila's daughter Roya faces the camera, lying on a white blanket with teal elephants.
A photo of Christina with her husband, Ezra and her daughter.
Melissa and Dean surround their daughter, Haley, who is wearing a blue jacket and a purple top.
Marlin stands with his family in a desert.
Sylvia and her mother smile with their heads pressed together, in a room with red walls.
Maria faces the camera and wears a black dress with flowers.
Ade smiles, facing the camera and wearing a blue top.
A person grimaces in pain and puts their hand to their forehead.
"Series B Funding" appears over the words "$50 million to transform rare disease research" with the AllStripes logo below.
Five pills in the center of a gray background.
Barry and his wife Sarah appear on their wedding day, smiling in their finery.
A green alarm clock with a white background.
Rhonda, dressed in blue as The Myositis Warrior, a superhero.
Hands type on a laptop, a stethoscope lying on the table next to them.
A singular blue and pink pill on a blue background.