NGLY1 Community Archives

Dec 10

0

NGLY1.org Research update: Generation of an induced pluripotent stem cell line …

By admin | Research and Science, Researchers and Clinicians | No Comments

NGLY1.org is thrilled to be actively involved in this important research! Generation of an induced pluripotent stem cell line (TRNDi002-B) from a patient carrying compound heterozygous p.Q208X and p.G310G mutations…

May 30

23

Superhuman Video: The Might Family

By admin | Media, NGLY1 Families | No Comments

Check out this powerful video about how our first NGLY1 Deficiency patient was found, and the incredible Might family (founders of NGLY1.org) who work tirelessly to help others affected by NGLY1…

May 15

4

NGLY1 Family Story – Marc F

By admin | NGLY1 Families | One Comment

Written by Marc's dad, Jordi. Marc was born with low weight and stayed in the NICU for three weeks. When he was three month old, during a routine visit to...

May 09

0

NGLY1 Family Article Excerpt: ‘Take care of yourself first’

By admin | NGLY1 Families | No Comments

Reprinted from the BLOOM BLOOM is talking to parents to learn about what they do to care for their mental health. First up is Laura Meffen. Laura’s daughter Emily Kerr,...

May 05

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Interview with Christina Lam, NGLY1 Specialist

By admin | Researchers and Clinicians | One Comment

Can you share a bit of your background? I was born and grew up in the Bay Area and then continued my education in Southern California. I knew science what...

Apr 05

3

NGLY1 Family Story – Willow H.

By admin | NGLY1 Families | No Comments

Written by Willow's mom, Anna. We noticed Willows development was delayed at three month old. We were told to prepare for at minimum three years of testing, and that we...

Aug 21

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Congratulations to NGLY1 researcher, Hamed Jafar-Nejad!

By NGLY1.org | NGLY1 Champions, Researchers and Clinicians | No Comments

Special congratulations to NGLY1 researcher Hamed Jafar-Nejad. He is the recipient of the Society for Glycobiology's 2017 Glycobiology Significant Achievement Award! Thank you Hamed for your dedication and passion for our...

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NGLY1.org Research update: Generation of an induced pluripotent stem cell line …

Superhuman Video: The Might Family

NGLY1 Family Story – Marc F

NGLY1 Family Article Excerpt: ‘Take care of yourself first’

Interview with Christina Lam, NGLY1 Specialist

NGLY1 Family Story – Willow H.

Congratulations to NGLY1 researcher, Hamed Jafar-Nejad!

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