ABOUT
Mission
Focus the biopharmaceutical industry’s attention on drug development for seriously ill kids
Impact
Creating Hope Act: Since 2012 when the Creating Hope Act first passed into law, there have been $4 billion in pediatric vouchers created to spur drug development for seriously ill kids. There are now numerous new companies developing drugs for seriously ill kids, companies whose revenue models rely upon Creating Hope Ace pediatric priority review vouchers.
All this means new drugs developed expressly for kids.
RACE for Children Act: Now, 80% of all newly approved cancer drugs with targets are substantially relevant to pediatric cancers have plans in place for pediatric studies.
All this means new drugs to treat adults with cancer are also studied in kids with cancer.
We also built a compassionate use access program and a post mortem brain tumor tissue program.
Recognition
We are proudest of the increased number of trials and drugs for seriously ill kids .
In addition to that, the following is a select list of our awards:
Peter Drucker Prize for Most Innovative Nonprofit in 2015
Fast Company #4 Top 10 Most Innovative Nonprofit in 2016
Nancy recognized by AACR for Distinguished Public Service in 2019
KVC honored by the Pacific Pediatric Neuro-Oncology Consortium (PNOC), Band of Parents, Rare Disease Legislative Advocates
Nancy invited to guest lecture at Broad Institute, MSKCC, UConn, Yale, CHOP, MGH, St Jude
Nature published an editorial in support of the Creating Hope Act voucher program
Nature Medicine published an opinion piece by Nancy on her work.
Leadership
Nancy Goodman
Founder and Executive Director nancygoodman@kidsvcancer.org
CLIMB THE HILL Youth Leadership Board
Major accomplishments as Executive Director of KIDS V CANCER
Regulatory policy reform to promote pediatric cancer drug development
2017 RACE for Children Act (21 U.S.C. 355c).
2012 Pediatric Priority Review Voucher Program (21 USC 360ff)
2021 Give Kids a Chance Act, HR 3433, S 2897
Selected Honors
2019 AACR Distinguished Advocacy Award
2016 Fast Company Magazine as top ten most innovative nonprofits
2015 Peter Drucker Nonprofit Innovation Award
Selected Memberships and Leadership Positions
2016 U.S. Vice President’s Blue Ribbon Panel for the Cancer Moonshot
2014-2018 National Cancer Institute Board of Scientific Counselors,
2014 FDA Pediatric Subcommittee of the Oncology Drug Advisory Committee
Selected Presentations
2012, 2014, 2015, 2020 Congressional testimonies
2019 Atlantic Live on Cancer
2018 NEJM/ TGen Pediatric Precision Oncology Conference
2018 Yale University: The Politics, Policy and Law of Cancer
2016 Broad Institute: Pediatric cancer drug development
2015 Memorial Sloan Kettering Cancer Center: The Art of Medicine
Personal
Nancy lives in D.C. with her husband, Michael Froman, and her surviving children, Ben and Sarah. Her son, Jacob, died of medulloblastoma. She was educated at University of Chicago Law School (JD) and Harvard Kennedy School of Government (MPP).
Jennifer Flynn
Outreach Director
Jenn@kidsvcancer.org
Jenn is Director of Kids v Cancer’s CLIMB THE HILL youth advocacy days, Youth Board, social media, events, and internship programs. Under Jenn’s leadership, Jenn has built the CLIMB THE HILL Day program:
— CLIMB THE HILL remote summer internships in which kids zoom Congressional offices on Capitol Hill
— CLIMB THE HILL after school program in which kids zoom Congressional offices weekly for a school semester
— CLIMB THE HILL day in September for 100 kids who are patients, survivors and siblings to go to Capitol Hill
— CLIMB THE HILL days for partner organizations to Kids with Cancer in which groups of kids from certain states come to DC together to climb Capitol Hill
— CLIMB THE HILL Youth Leadership initiative in which a small group of our most highly trained kid leaders have been individually advocating for specific pediatric cancer policies on Capitol Hill and leading other kids on their CLIMB THE HILL days
All CLIMB THE HILL day visits are conducts by kids without adult supervision or attendance. Kids are the most powerful voice in defense of current and future children with cancer.
Jenn knew and loved Jacob from the time he was a very little boy until his death.
Scientific Advisory Board
Susan Blaney, MD, Texas Children's
Lia Gore, MD, Colorado Children's
Richard Gorlick, MD, MD Anderson
Doug Hawkins, MD, Seattle Children's
Andrew Kung, MD, MKSCC
Crystal Mackall, MD, Stanford
Robbie Majzner, MD, Dana Farber
Duane Mitchell, MD PhD, University of Florida
Kim Steigmeier, MD, Dana Farber
Hannah Adams
Ratika Arora
Ava Blaser
Emma Blaser
Sophie Bronner
Katie Clowers
Roma Dhingra
Grace Eline
LeAnna Headley
Ali Hornung-Taylor
Leia Hunt
Scarlett James
Amy Kindstedt
Lauren Riecke
Ava Santhuff
Anton Usdin
Cindy Vo
Jacob Froman
Kids v Cancer was founded in memory of Nancy’s and Michael's son, Jacob Froman.
Jacob was a spectacular, funny, bright, sweet and earnest eight year old boy. He loved all sports, performing rock music (he played keyboard and sang) and his little brother Ben. He would have loved his new sister, Sarah.
Jacob was diagnosed with medulloblastoma, a rare form of brain cancer, when he was eight. At various stages, Jacob suffered serious impairments, including an inability to speak, eat and walk. He was in-patient for a total of nine months over two years. Still, he was determined to return to school, spend time with his brother, family and friends and live as close to a normal life as possible. He never complained and had an unfailingly positive attitude.
During the course of his treatment, he underwent several surgeries, six weeks of daily radiation and multiple rounds of chemotherapy – standard, metronomic, high-dose, experimental and finally palliative. Unfortunately, none of these efforts eliminated the disease. Each round took its toll on his body, ultimately shutting down his systems and making it impossible for him to receive further treatment. The disease spread throughout his brain and spine, and he died on January 16, 2009, at the age of 10.
Throughout Jacob’s treatment, Nancy and Michael contacted pediatric brain cancer researchers and clinicians at more than 35 different hospitals across more than a dozen countries. They worked with dedicated scientists and physicians who were hampered by a lack of new drugs with which to treat children, a lack of tissue samples with which to study pediatric cancers (and ultimately design new drugs), and a lack of access to funding which would enable them to carry on their research.
Jacob’s story can be found at www.caringbridge.org/visit/jacobfroman