NGLY1 is a highly conserved and powerful gene. Over the last decade, Grace Science has built a global team of bench scientists and clinicians to understand its pathway. Our team has amassed a wealth of unparalleled knowledge.
A significant breakthrough came in 2017, when co-founder Dr. Carolyn Bertozzi connected NGLY1 with multiple cancers and with more common neurodegenerative diseases.
Alejandro was diagnosed with NGLY1 Deficiency at five years old. He is a cheerful boy. Though he is non-verbal, he is able to communicate his needs to his parents well. Going to the supermarket is his favorite activity, but he also likes dancing and watching Daniel Tiger and Dora the Explorer.
"You were the greatest gift of our lives. You taught us the true meaning of unconditional love and gave us strength. You were a warrior who always managed to make us smile. Our hearts break at the thought of living without you. Until we meet again!"
- Ezaan’s parents
Rupert is an incredibly social little boy. He loves listening to music, being sung to and his true passion is books!
"We were so blessed to have almost 22 years with Emily. We miss her so dearly, everyday. Emily brought so much love, joy, laughter and sassiness to our lives. Emily loved knock knock jokes, watching Barney and singing to her favorite songs." -Emily's parents
Gage was a perpetually happy young man who wanted nothing more than to be with his family watching the St. Louis cardinals, riding in the car, and participating with his parents in triathlons.
Numa lives in the south of France. He enjoys reading with his dad, wheelchair racing and school.
Ally and Avah
Sisters, Ally and Avah enjoy listening to music and absolutely love school. Ally can play hand clapping games which is her favorite social interaction with others. Both girls are usually smiling and always looking forward to their next activity.
Tai Tai enjoyed his 1st Christmas away from his home country of China. He’s adapting to the new living environment, weather, language and new school. His parents’ wish is that all the NGLY1 children can live a happy life.
Benjamin lives in Hawaii. He is amazed by elevators and vehicles, LOVES math and has his own gym membership! He spends a ton of time in therapies and is becoming more vocal every day.
Elora was diagnosed just before her 2nd birthday. She loves books and watching her favorite TV shows with her family. Elora is a very determined little girl and works very hard in all her therapies.
Nicholas has a smile that brings positivity to everyone around him. Sadly he struggles with many activities we take for granted such as communication, mobility, and feeding. Nicholas’ family prays for a miracle to save him and all other NGLY1 patients.
Owen is a very happy boy. Owen loves to crawl and walk along the couch and is motivated by food. His favorite things to do are to watch Little Baby Bum videos and play games on his iPad.