2019 Global Gene Rare Champion of Hope

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.