This was written by Abby’s mom, Patty Furco.
Cancer can make you feel helpless. You want to fix things for your child and you can’t. During and after treatment, parents have little control. Yes, we can advocate for our kids, find the best medical team, the best treatments, hospital, and love on them. But how can we help?
I want to help others that are on the path we lived on for years. Witnessing the devastation and disruption that childhood cancer families go through, it’s impossible to not be changed by what I’ve seen and experienced. My journey as a hands-on, living it day to day, childhood cancer caregiver is over. My incredible daughter Abby, forever 15, passed away last October after a valiant 11-year battle with cancer and its effects. However, my role in the childhood cancer world is not over. I need to help. I do not want other families going through things that we did. How can I (and we as a childhood cancer community) make things better for children and families? How do we create more survivors? Where do we go from here?
In 2012, we learned about the St. Baldrick’s Foundation funding childhood cancer-specific1 research and knew we wanted to join their efforts. Before we were part of the childhood cancer world, St. Baldrick’s had funded two trials that Abby had access to during her treatments – one drug helped her gain remission in 2011, and the other brought her out of heart failure in 2014/2015. Both of these drugs helped her live and love longer. We have fundraised, participated, and organized St. Baldrick’s Foundation events since.
We have been champions of childhood cancer research federal funding by visiting the halls of Congress in person and virtually over the years and by serving as a 2017 Ambassador family.
The St. Baldrick’s Foundation co-chairs a childhood cancer coalition called the Alliance for Childhood Cancer, which brings together other organizations and families to advocate for initiatives to help increase federal funding and federal childhood cancer support as a whole. We have introduced why childhood cancer-specific funding is needed and have secured support and funding for the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill ever. This funding has created programs that help facilitate more research in childhood cancers and survivorship, ultimately in hopes to increase survivor rates and one day find cures.
Participating in these advocacy days has allowed me to meet other incredible families of both bereaved children and survivors. Not only are we able to support each other with a deep understanding, these meetings continue to fuel my fire to do more.
I was honored this year to be selected to nationally represent childhood cancer advocates and attend the American Association of Cancer Research (AACR) Scientist <-> Survivor Program. I joined 30 other patient advocates in person in New Orleans along with 20,000 researchers, doctors, medical representatives and overall just smart people. We learned so much as advocates and were exposed to exponentially more information about where cancer research is today and where it is headed in the future. Our program was founded, created, and facilitated by the incredible Dr. Anna Barker, past deputy director of the National Cancer Institute (NCI). Dr. Barker is a firm believer that a well-educated patient advocate role within cancer research is a pivotal piece of the puzzle. Our program was created to build us up, help us learn from one another and the thousands of educators at the conference, and then let us go out and do good things.
As a part of this program, I had the honor of presenting the St. Baldrick’s Foundation’s current action plan during a poster session and educating anyone that wanted to listen about the great things St. Baldrick’s does for children battling cancer.
But I am just one person. How can I be a bigger voice and spread the impact? I’m learning there isn’t one straightforward answer. The power of many is a key part of this. How can we as parents, family members or friends in the childhood cancer world help?
One way to help is by building support for the Childhood Cancer STAR Reauthorization Act. This bill will allow the programs from the STAR Act – including the investments in childhood cancer research – to continue for 5 more years. I invite you to click the link below, or text STAR4KIDS to 52886 to take action today.
For those of you in the trenches, I’ve got your back. You love on your child, you plan those appointments, scans, hospitalizations, medicines, treatments…do what you do each day. If there is a day that you have a moment to take a breath, do that first. Do something for yourself or other family members and friends. After that, if you feel the need for action, share your story. Take a moment to write or talk about your every day.
Even though I lived it every day for 11 years, I never quite grasped how powerful our stories can be. They are meaningful and can be helpful to others, not only in getting funding and sharing the importance of research, but also instilling hope.
We continue to fundraise, raise awareness, fund research, and love on our children, our families, other families in the battle, while we support one another. My story isn’t ending here, I’m still thinking, wondering, acting…what is next? How can I help even more? Stay tuned…
Click the link below, or text STAR4KIDS to 52886 to take action today
Read more on the St. Baldrick’s blog:
The childhood cancer community is filled with passionate, dedicated advocates rallying together to make a difference for kids with cancer and childhood cancer survivors. Thanks to the tremendous advocacy of the childhood cancer community, Congress, the Administration, and the National Cancer Institute (NCI) are taking notice.
Over the last five years, childhood cancer advocates have successfully lobbied for meaningful policies and changes. Back in 2018, Congress unanimously passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, the most comprehensive childhood cancer legislation in history.
And the community’s advocacy didn’t stop there. Each year since the STAR Act was signed into law, Congress fully funded the programs STAR created, providing $30 million each year in new resources for childhood cancer. Now Congress is poised to extend the STAR Act further. Just last month, childhood cancer champions introduced H.R. 7630/S. 4120, the Childhood Cancer STAR Reauthorization Act to allow the programs from the STAR Act to continue for five more years.
On the heels of the success of the Childhood Cancer STAR Act, the Childhood Cancer Data Initiative (CCDI) was created in 2019 with the goal of funding $50 million in new childhood cancer research funding each year for ten years. As with the STAR Act, the childhood cancer community has successfully advocated for full funding for CCDI each year. That means Congress has provided $270 million in new resources for childhood cancer since the STAR Act and CCDI were created.
These accomplishments in advocacy are also changing the research landscape at NCI. For many years, the childhood cancer community has rallied around a particularly startling statistic: Less than 4% of the National Cancer Institute’s (NCI) budget funds childhood cancer research. This number so strikingly sums up the frustration about the lack of investment in treatments for kids with cancer and the slow pace of research. The 4% statistic has been a rallying cry for the childhood cancer community to demand better for kids with cancer – and after years of advocacy for more federal research funding, that 4% statistic has indeed changed. Thanks to the tremendous advocacy of St. Baldrick’s advocates and the childhood cancer community, NCI has more than doubled its investment in childhood cancer research in recent years.
The groundswell of advocacy and the investments foundations like St. Baldrick’s makes in early-career researchers and groundbreaking research have paved the way for more funding for childhood cancer research at NCI. In federal fiscal year 2020, NCI spent more than $500 million on childhood cancer for the first time, representing nearly 8% of its total budget that year.
But the work doesn’t stop here. The St. Baldrick’s Foundation will continue to keep up the pressure for more funding to develop new, safer therapies for kids with cancer. Join us today by urging your members of Congress to cosponsor the Childhood Cancer STAR Reauthorization Act, which will allow the programs – and funding – from the STAR Act to continue for five more years.
Click the link below, or text STAR4KIDS to 52886 to take action today.
Read more on the St. Baldrick’s blog:
Patient advocates play a vital role in the St. Baldrick’s — Stand Up To Cancer Pediatric Dream Team.
Patient advocates help to put a face on childhood cancer research. They humanize why the research is so critically important and translate that incredible work into language that’s more easily understood. Many are parents of kids who have fought cancer and one is a survivor herself. All are working to see the day when no family has to endure what they have.
Join us today to #GiveKidsALifetime!
Read more on the St. Baldrick’s blog:
This week is National Volunteer Week – a week dedicated to celebrating YOU, our tireless volunteers who have risen to the challenges of the past year. Even though the pandemic presented us with many obstacles, it also gave us new opportunities for creativity and ingenuity.
Our hearts are broken at the loss of Campbell, a 2021 St. Baldrick’s Ambassador. She died on February 22, 2021 due to a brain hemorrhage brought on by CIC-DUX4 Sarcoma. Campbell was remarkable in every way and will always be an inspiration.
Originally posted January 20, 2021
I voted for the first time in November, but this is not my first-time letting Congress know how I feel. In 2018 I lobbied on Capitol Hill with a group of childhood cancer warriors, siblings, and advocates. I shared my story with three members of Congress and pushed for legislation to help kids with cancer. Having gone through treatment for more than three years at this point, I was especially determined to cast my ballot in this year’s presidential election. As a new voter, I am also looking forward to being part of the St. Baldrick’s Speak Up for Kids’ Cancer Network so I can raise my voice for kids with cancer and childhood cancer survivors in the year ahead.
Federal Funding for Childhood Cancer Research: A Conversation with Dr. Ned Sharpless, Director of the National Cancer Institute
As the largest non-government funder of childhood cancer research grants, and as a leader in childhood cancer advocacy, the St. Baldrick’s Foundation has a deep interest in the work that the federal government is doing to advance treatments. As part of the St. Baldrick’s Foundation Impact Series, on January 14, 2021, St. Baldrick’s Foundation CEO Kathleen Ruddy had a conversation with Dr. Ned Sharpless, Director of the National Cancer Institute (NCI), about the NCI’s broad pediatric cancer portfolio.
Shamari is a 15-year old survivor, serving as a 2020 St. Baldrick’s Ambassador. She’s also a strong advocate for childhood cancer research funding and will be part of the Virtual Day of Action on September 9. Please join the Speak Up for Kids’ Cancer advocacy action network to join her!
Join us on September 9 for a Virtual Day of action to urge Congress to fund the Childhood Cancer STAR Act for another year! Sign up for the St. Baldrick’s Speak Up for Kids’ Cancer advocacy action network to receive email updates for how to participate.
Read on for updates on the State of the Union, the President’s budget proposal, and events during Rare Disease Week on Capitol Hill.
We hope you are having a great start to the new year! Read on for legislative updates, upcoming meetings and events, and ways to get more involved as we hit the ground running in 2020.
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