#CDGcommunity
CDG: A Community of HOPE features Sandro Bellinzis
CDG: A Community of HOPE!
This week's edition features...
Sandro Bellinzis is a 
loving CDG Dad and an 
invested advocate.
When CDG #SLC35A2CDG burst into his (and his Family) life, Sandro felt he needed a 
door to knock on but he couldn't find any.
That is why Sandro decided to take matters into his own hands, creating
.
Sandro didn't only build a , he has built a 
house full of 
information
and 
comfort to be shared with other #CDGFamilies.
He gives us HOPE!
#CDGCommunity #CDGDiversity #RareNotAlone
Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content
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Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types
CDG: A Community of HOPE features Dr Ethan Perlstein
CDG: A Community of HOPE!
This week's edition features...
Ethan Perlstein is a 
researcher and 
entrepreneur who has been:
1) Partnering with 
#CDGFamilies to accelerate #CDGResearch, and;
2) Focusing on creating innovative 
disease models for #PMM2CDG.
Thanks to all the work developed by Dr Perstein and his team a existing drug (approved in Japan to treat diabetic neuropathy) is currently being tested as a possible treatment for #PMM2CDG #DrugRepurposing To learn more about that work, visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6899038/
He gives us HOPE!
#CDGCommunity #CDGDiversity #RareNotAlone
Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content
CDG: A Community of HOPE features Vijay Sappani
CDG: A Community of HOPE!
This edition features...
Vijay Sappani, a CDG Father who describes CDG as "a complete life changer".
Besides working daily on making sure his daughter needs are met, Vijay is also a committed CDG Advocate & entrepreneur.
CDG changed Vijay's life, he is now working towards ensuring that his contribution changes the lives of the #CDGCommunity for the better!
.
He gives us HOPE!
#CDGCommunity #CDGDiversity #RareNotAlone
Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content
----------
Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types
CDG: A Community of HOPE features Dr Christina Lam
CDG: A Community of HOPE!
This edition features...
Dr Christina Lam:
-> a 
CDG Professional who is also actively involved in family/patient 
education and empowerment.
"As a physician, It brings me joy to come to see these individuals with CDG". And, Dr Lam for sure brings joy and comfort to all the (many, many!) CDG patients and families she cares for (and about
).
.She gives us HOPE!
#CDGCommunity #CDGDiversity #RareNotAlone
Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content
----------
Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types
CDG: A Community of HOPE features Merell Liddle
CDG: A Community of HOPE!
Our guest of honour is Merell Liddle
:
1) CDG Mom; 2) CDG advocate extraordinaire, and; 3) amazing Woman!
She has been a very active member of the #CDGCommunity: from 
research partner, to conference speaker, to 
language and communication expert, to empowering advocate - she has done it ALL and helped so many while doing it!
She gives us HOPE!
#CDGCommunity #CDGDiversity #RareNotAlone
Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content
----------
Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types
CDG: A Community of HOPE features Dr Mercedes Serrano
CDG: A Community of HOPE!
We are so happy to host Dr Mercedes Serrano!
Dr Serrano is a CDG leading specialist. Based in Barcelona, 
she works very closely with the Spanish #CDGCommunity, but with our 
community too.
She has been leading a clinical trial for PMM2-CDG (repurposing acetazolomide for the treatment of cerebellum-associated manifestations)
She gives us HOPE!
#CDGCommunity #CDGDiversity #RareNotAlone
Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content
----------
Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making and altering sugars and attaching them to proteins and lipids. There are over 140 different CDG types.
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