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aislingmcn

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2 reviews

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

The Nomid Alliance has helped me deal with my Son Jack's illness. He has Down syndrome as well as CINCA/NOMID and is a complex little chappie.
Without the help of The Nomid Alliance and Karen Durrant We would be in limbo! I have discovered things through other Parents and their experiences of CINCA. I was also able to read about the Doctors who specialise in the field and the treatments available to us.
My son was diagnosed at the age of 2 here in Ireland where he is the only case. It was confirmed a year later clinically in Great Ormond Street hospital,London,UK.
I have been in contact with many doctors via this website by getting their names, contact details and the hospitals they worked in.
Jack's DNA is in San Francisco for Genetic Testing with Prof Hoffman but the genetic mutation has yet to be found.
My son is the only known case Worldwide to have both Down syndrome and CINCA/NOMID so it is of great use to me to have this site to come to for help.
I would like to commend everyone who is involved in the day to day running of this site but most especially Karen who goes above and beyond to help us all. Thank you from the bottom of our hearts.
Aisling & Jack McNiffe. (Aged 6 years old)

I've personally experienced the results of this organization in...

Everything to do with my Son,I would be lost without the help I get here.

If I had to make changes to this organization, I would...

At the moment Nothing I would change. The Admin does a great job.

Role:  Client Served & Raise awareness of rare diseases/syndromes at home.
 

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

The Nomid Alliance has helped me deal with my Son Jack's illness. He has Down syndrome as well as CINCA/NOMID and is a complex little chappie.
Without the help of The Nomid Alliance and Karen Durrant We would be in limbo! I have discovered things through other Parents and their experiences of CINCA. I was also able to read about the Doctors who specialise in the field and the treatments available to us.
My son was diagnosed at the age of 2 here in Ireland where he is the only case. It was confirmed a year later clinically in Great Ormond Street hospital.
I have been in contact with many doctors via this website by getting their names, contact details and the hospitals they worked in.
Jack's DNA is in San Francisco for Genetic Testing with Prof Hoffman but the genetic mutation has yet to be found.
My son is the only known case Worldwide to have both Down syndrome and CINCA/NOMID so it is of great use to me to have this site to come to for help.
I would like to commend everyone who is involved in the day to day running of this site but most especially Karen who goes above and beyond to help us all. Thank you from the bottom of our hearts.
Aisling & Jack McNiffe.

I've personally experienced the results of this organization in...

so many ways to be truly helpful.

If I had to make changes to this organization, I would...

Not change it.

Role:  Board Member & I strive to create awareness of rare diseases in my own Country.