We live in an increasingly connected world. The internet enables information gathering and sharing among individuals. It decreases barriers that once existed between academics and individuals. In the pediatric cancer community, social media platforms have given space to grassroots movements in the form of advocacy groups.

     The modern medical landscape is different. Parents present to clinic armed with journals and knowledge that anecdotally, someone else is doing this differently and they want to know why. 

    Elevate was born out of a mom asking, “How do we change the landscape?”

I contribute to Elevate because I want to be active in the conversation.

      My daughter has had Wilm’s tumor twice. Two years after her initial diagnosis, we discovered that my husband and I are carriers of a rare genetic condition.  

[Learn more about this genetic condition, Perlman syndrome, HERE and below.]

   When both copies are inherited, the child has a 64% chance of developing a Wilms tumor by age 8. Finding out critical family planning information at such a late stage meant that all we can do is screen our children for cancer every three months with surveillance scans. Three of our five children inherited both copies. Elevate is relevant for us because we know our story with Wilms tumor isn’t finished. We want other families to have the knowledge to decide if screening is appropriate for their family and the language to ask for it.

Elevate provides a space to work towards solutions and a platform to make effective change.