Please join No More Pokes Foundation and Dr. Dickens, Pediatric Oncologist at Stead Family Children’s Hospital in the fight for more Genetic testing at Birth through the heel poke and for Genetic Counseling to be readily available to everyone through insurance, including family members of those effected by Genetic diseases like Childhood Cancer. 

This Petition will be shown before our State Representatives in hopes of helping Dr. Dickens pass a bill in Iowa. It is with our help as Families impacted by diseases and those of you in our Community that we will see change. Our children deserve more. 

As a mother of a former Childhood Cancer Warrior treated at University of Iowa in 2021, I am coming to the State of Iowa pleading for more. My son Bentley, endured 347 pokes in a span of 8 months while on treatment for a exceptionally rare form of Embryonal Rhabdomyosarcoma. Ultimately Bentley lost his life on September, 1st 2021. We later found out in February after sending his tumor off for Genetic testing to see if his two younger siblings who also have health issues were at risk for Cancers, that Bentley carried 14 gene mutations two of which are completely unexplained. These two specific genes essentially made him resistant to the harsh therapies. He also had many near death experiences resulting in major Brain surgeries. The cost of the genetic testing on tumors after loss can range from 3,000-7,000 out of pocket. With the information we gathered Bentleys two younger brothers have been waiting for their genetic testing since Decemeber and we have yet to be contacted due to the unavailability in Iowa. But the problem doesn’t end there. Often times families will wait 6-12 months for these appointments just to be turned away for insurance reasons.

Why are we not doing more to prevent life threatening diseases before it’s too late? 

If I told you that by adding 11 gene markers to even the heel poke at birth we could cut deaths to Children by Cancers in half, would it be worth it to you?

Please join us in the fight for more answers, innovative research and for needed Genetic Care to be easily accessible for everyone.  One less poke is one step in the right direction. Let’s take on Iowa and next Washington D.C. 
 

Shatiera Degeest and Kirstin Grimm Co-Founders of No More Pokes Foundation, Dr. Dickens Pediatric Oncology- University of Iowa Stead Family Children’s Hospital 

https://www.facebook.com/NMPFoundation/