The Comer Family & Elevate Wilms

Change Starts From The Ground Up

Elevate provides a space to work towards solutions

and a platform to make effective change.

   – C. Comer MTS, BSN, RN,

Guest Blog by: C. Comer MTS, BSN, RN

      In the past, people with a common cause may have had coffee. Today, they zoom or form social media groups. They find ways in this increasingly connected world to share information, ask questions, and extend support. They fundraise, identify leaders, and rise out of common ground. An identity emerges around a common goal.  They bridge build with community leaders, engage civically, show up in numbers, and start conversations. 

   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.

 

Artwork by Ella, 6 years old

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Learn more about Perlman sydrome HERE

Explore the Elevate Wilms workgroup

What are we doing?

Elevate workgroups are the core of Elevate Childhood Cancer Research and Advocacy, Inc.” – Chris Osborne, Elevate Board Chair

          

    Elevate Wilms is a part of the advocacy committee within Elevate Childhood Cancer Research and Advocacy with two main priorities:

 

1. Create useful educational materials and programs to help

families better advocate within the medical system on behalf of their child 

AND

2. Enable patient/advocates and caregivers (PACs) to instigate improvements

in therapy development for children diagnosed with cancer

 

 

    Elevate is reimagining treatment for those diagnosed with childhood cancer, like Wilms tumor and we need your help.  Our efforts will collectively build a brighter and healthier future for our children by building a roadmap to discover more effective, less harsh treatments.

Elevate Wilms Workgroup Update

    The workgroup has an overarching goal of creating a Virtual Symposium for Wilms tumor during the winter of 2024, so they’ve been hard at work to identify important topics from diagnosis to treatment to survivorship.

     In addition to this NEXT WEEK  members of this group head to Memorial Sloan Kettering, in NYC, for the Pediatric Renal Conference! This group is not only working behind the scenes but moving forward and making the needed connections through educated advocacy!

Join Elevate

Your support can make a world of difference. Whether you choose to donate, volunteer, or simply share our blog post, every action counts. Together, we can elevate childhood cancer research and advocacy to new heights. Stand with us in this crucial battle and help bring hope to countless children and their families.

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and Advocacy, Inc.
is a registered 501(c)(3) non-profit organization.
EIN: 93-2185372

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