Each year, Global Genes, a leading global rare disease patient advocacy organization, asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease.  Nominations are accepted in the areas of advocacy, medical care and treatment, and science and technology.

I was nominated this year to receive the reward!

I am so proud and honored.  I am often asked what drives the 70 hour weeks, travel and tears.  The answer is Maxwell’s little face and all of the other children affected by this horrible neurological disease.  I live the other the family’s sad stories and hear the hopelessness in their voice – like a child requiring plastic surgery from breaking their nose seizing.  These kids did nothing to deserve their suffering.  Nobody can advocate better than a mother for her child and I will not stop until a cure is found.

Freed Family-5.jpg




SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.

1 Comment

Harriet Renner · May 30, 2019 at 2:14 am

Dearest Amber,
I am so very touched with ALL you do! You are a beautiful advocate for Maxwell and all the other babies. Stay with it. I hope to see all of you when I return from my Texas trip. I get home on June 10th. Love you you and your precious family. Harriet

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