October not only brought a brilliant display of color to many locations throughout North America, but it convened the Elevate Wilms Workgroup, under the banner of orange, the color that represents kidney cancers.

   “Elevate Workgroups are the core of Elevate Childhood Cancer Research and Advocacy, Inc.” says, Chris Osborne, Elevate Board Chair.

Elevate workgroups (Elevate Rhabdo, Elevate Wilms) are 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] Empower patients/advocates and caregivers (PACs) to instigate improvements in therapy development for children diagnosed with cancer.

   The Elevate Wilms workgroup is tasked with developing a global roadmap to improve the diagnosis, treatment and survivorship for those diagnosed with Wilms tumor (kidney cancer).

   Armed with these goals, Elevate board members, Wilms tumor caregivers, advocates and a retired nephrologist all met to begin a mission that is long overdue. Participants connected covering 3 different time zones and began to work providing insight to make Elevate, as an organization, aware of the disease specific needs which will help Elevate determine resource allocation.  

    We seek to improve the lives of those diagnosed with Wilms tumor, as well as other childhood cancers, by getting the money and resources where they need to go.

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   Lucy Sandeen (Elayna’s Mommy), Elevate Wilms workgroup member shares, “I’m very excited to join Elevate in the crucial mission of finding new ways to propel research forward for our children with cancer because our family has learned the hard way that there are gaps and bottlenecks in childhood cancer research, and that they create a deadly environment for some of our kids who need new, more effective options.
These gaps and bottlenecks in the process exist from lack of awareness, lack of funding, and sometimes even simply from lack of collaboration. Elevate seeks to change that.”

 [Read more from Lucy below.]

     Tricia Gray, Elevate Wilms workgroup member, (Nathan’s mom) recalls, “I went from making pizzas to reading medical journals in hopes we [Tricia’s husband/Nathan’s dad] would make the right decisions. Neither one of us had medical training, we were thrown into this world of childhood cancer and deciding which chemotherapies *might* save his life.

I need to be part of this Elevate Wilms workgroup so no parent is making life or death decisions for their child without an ounce of medical knowledge. The doctors need tools to do better for the children fighting today and those who will be diagnosed in the future.” [Read more from Tricia below.]

This inaugural meeting brought a sense of excitement within its urgency. Tears of relief that the development of a roadmap is finally a reality for those diagnosed with Wilms tumor and others within this childhood cancer community were shed.

                        The wait is over. The work has begun.

    Elevate has a goal that theElevate Wilms workgroup participants will gain more connections, opportunities, knowledge, insight and skill within their areas of passion in order for them to be impactful in their efforts.

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Tricia Gray, Nathan’s Mom says,

   “My son Nathan was originally diagnosed the end of February 2016 with stage III Wilms tumor, he was two years old. At home I also had a three year old and 9 month old. My husband and I both worked full time, I was running a family restaurant and he was a food service manager. By June, only 4 months later doctors had us decide which treatment Nathan should be placed on for a relapse. Neither one of us had medical training, we were thrown into this world of childhood cancer and deciding which chemotherapies *might* save his life. I went from making pizzas to reading medical journals in hopes we would make the right decisions. No parent should have to be making life or death decisions for their child without an ounce of medical knowledge.

   Nathan died January 2021. I chose to be a part of this Elevate Wilms Workgroup because the doctors need tools to do better for the children fighting cancer today; and for those who will be diagnosed in the future.“

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We want to hear from you! Join us by sending a message below.

  We are looking for: those affected by Wilms tumor, patients, advocates and caregivers and/or those within the scientific and academia realms that would like to share their knowledge and experience about this deadly disease. Elevate knows that the Elevate Wilms Workgroup participants will gain more personal connections, opportunities, knowledge, insight and skill within each person’s areas of passion and collectively, we will accomplish improvements for those impacted by this disease.