$16 Million Raised to Launch First-of-its-kind “Genomic Answers for Kids” Project
Thousands of genetic diseases affecting children remain undiscovered and untreatable, but thanks to the generosity of the Kansas City community and the opening of the new Children’s Mercy Research Institute (CMRI) in early 2021, Children’s Mercy is poised to lead the nation in finding answers for waiting families.
Today it was announced that Genomic Answers for Kids, a first-of-its-kind pediatric data repository and the flagship research initiative of CMRI, has received $16 million in donations to accelerate the search for diagnoses and novel treatments for pediatric genetic conditions.
Pediatric research is significantly underfunded as the National Institutes of Health allocates only 10% of its $37 billion research budget to pediatrics and currently only about 20% of kids with rare or life-threatening diseases get an answer from genetic testing. Tomi Pastinen, MD, PhD, director of the Genomic Medicine Center, said this project will improve those outcomes. “On average, families wait five to seven years for a diagnosis and that’s simply too long – this database will be used to identify other genetic diseases, and research treatments and cures in the future. It will move kids to the front of the line.”
The goal of Genomic Answers for Kids is to collect genomic data and health information for 30,000 children and their families, creating a database of nearly 100,000 genomes.
“Normally to get a project of this magnitude up and running it would take years, but because of this $16 million dollar gift, we already have more than 1,750 families enrolled in the program, which has resulted in more than 6,000 new genomic analyses, more than 170 genetic diagnoses with new answers found every week, and contributed to the discovery of eight new genes,” Dr. Pastinen said “We’re investing in thousands of families here in the Kansas City region and beyond to give families the answers they deserve.”
Thanks to 76 donors to-date, Children’s Mercy already has more participants enrolled in Genomic Answers for Kids than other studies across the nation that have been in progress for several years.
“I’m continuously amazed at the generosity of the Kansas City community – it is a community that believes in rallying together to give hope and healing to families for generations to come. Because of these donors, Children’s Mercy and Kansas City will be a destination not only for kids in our region, but around the world – what an incredible gift!” Jenea Oliver, Senior Vice President and Chief Development Officer, said.
Brad Bradley and Robbie Harding are one of the donor couples. Robbie’s daughter was born with Down Syndrome and at the age of 12 was diagnosed with Acute Lymphoblastic Leukemia and had to undergo 30 months of treatment. Two years later, she relapsed and had to endure an additional 30 months of treatment. She has now been cancer free for over three years, but it was a long journey.
“Like most parents with children that have been diagnosed with a rare disease, I’ve asked myself many times ― why does this happen? Is there a treatment? If so, is there a less painful, damaging treatment? And in our case, why do kids with Down Syndrome have ten times the risk of getting cancer?” Brad said, “We give to Genomic Answers for Kids because learning the answers to some of these baffling questions will hopefully bring some comfort and even normalcy into what is a very dark and difficult time for many families.”
Learn more about Genomic Answers for Kids.
Thank you to the following lead donors for their support of Genomic Answers for Kids and the Children’s Mercy Research Institute:
American Century Investments Foundation
Vicki and David Block
Roberta D. Harding and William F. Bradley, Jr.
Linda and Paul DeBruce
Dee and Dave Dillon
The Stanley H. Durwood Foundation
Diane and Terrence Gallagher
Members of the Hall Family in honor of Adele Hall
Dr. D. Stanley and Sidney Hite
William T. Kemper Foundation – Commerce Bank, Trustee
Bill and Becky Krueger
Marion Merrell Dow Donor Advisory Fund
Harry Portman Charitable Trust
R and C Charitable Foundation
Jim and Mary Stilley
Erika and Kevin Sweeney