ACCO is Grateful to Our Regional Advocacy Ambassadors, Amy & Hannah

Posted on October 5, 2022 by American Childhood Cancer Organization

Advocacy is at the heart of ACCO’s mission and ACCO’s Regional Advocacy Ambassador’s, Amy and Hannah embrace that fully. Thank you for using your talents to make a difference. We are pleased to recognize you and grateful to have you on our What About Kids team!

Meet Regional Advocacy Ambassador, Amy

Since 2017, we are proud and honored to have worked with state legislatures across the country to secure $66 million dollars in funding with the goal of overcoming the national disparity between adult and childhood cancer research. Many times this effort begins with state cancer action plans. Currently only 11 states include substantive language specific to childhood cancer. We believe each state should have specific objectives related to childhood cancer! It takes a team to make meaningful policy change and we are so thankful to have such talented individuals committed to this cause.

One of those is Amy Kindstedt, a ACCO Regional Advocacy Ambassador. As a high school sophomore and two-time childhood cancer survivor, Amy works tirelessly to conduct outreach to new volunteers, reach out to legislators and partners, gather data about any existing childhood cancer work, and create systems to organize data so we can efficiently move forward. Recently, Amy reached out to all 50 states to develop partnerships and share information to create change for this important initiative.

Meet Regional Advocacy Ambassador, Hannah

At the American Childhood Cancer Organization we are proud that ALL of our advocacy team are childhood cancer survivors or parents of children diagnosed with cancer. We know that those directly impacted are the most powerful advocates as we share personal stories with elected officials and key leaders. We invite you to meet Hannah Adams, a 12 year survivor of Stage 3 Nephroblastoma.

Hannah Adams, of Alabama, is a critical member of this team serving as a Regional Advocacy Ambassador. After enduring surgery, radiation, and chemo she is on fire for the cause to help other children, adolescents and young adults impacted by this horrible disease. In this role Hannah has provided key assistance in state-level advocacy for childhood cancer research appropriations as well as inclusion of specific childhood cancer content in state cancer action plans communicating with all 50 states. Hannah’s leadership in grassroots advocacy has resulted in impactful progress in California, Alabama, Florida, South Carolina, Arkansas and Tennessee – and she is just getting started!

CEO of ACCO Ruth Hoffman Shares Her “Why”

Posted on September 7, 2022 by American Childhood Cancer Organization

When my 7-year-old daughter was diagnosed with acute myelogenous leukemia (AML) in 1987, I was grateful for the early research being done on bone marrow transplantation, a treatment that would ultimately save her life. Total body radiation and chemotherapy were so toxic. I believed that within twenty years, innovative research would result in new treatments – treatments that wouldn’t be so toxic to children with cancer. It’s been thirty-five years since her diagnosis and treatment and sadly, there has been little change in the treatment protocol for children diagnosed with AML.

Cancer remains the number one cause of death by disease for children in the U.S. Unlike many adult cancers that have declined in incidence, childhood cancer incidence is increasing. Despite these alarming statistics, 30 states do not include any childhood cancer language in their comprehensive cancer plans; and as of 2017, no states had specifically appropriated funding for childhood cancer research in their state budgets.

This is why I have remained committed to this cause for the last 35 years and why I am proud of my team at ACCO. Together, we have worked hard to change this landscape. I hired a former legislative agent to launch ACCO’s “What About Kids” Research Initiative in KY which resulted in the first specific childhood cancer research appropriation in 2018. Since then, ACCO has continued to build its team who works closely with state governments to reduce the disparity between adult and pediatric cancer.

To date, $66 million has been appropriated for childhood cancer in four states because of ACCO’s “What About Kids” State Research Initiative, with more than $30 million appropriated in the last year!

In 2022, through the work of ACCO’s Director of Government Affairs and our KY-based Advocacy Regional Coordinator, Kentucky’s General Assembly increased its state appropriation from $2.5 million annually to $6.25 million for FY 2023-24 bringing the total appropriation for childhood cancer in Kentucky to $22,500,000 from FY 2018 – FY 2024.

In 2022, ACCO’s continued advocacy with New Jersey’s governor resulted in an additional $10 million appropriated for childhood cancer research, bringing NJ to a total of $25,000,000 appropriated to date.

In 2022, ACCO’s advocacy with PA resulted in an additional $7.5 million appropriated for childhood cancer research at 3 academic research institutions, bringing PA to a total of $17.5 million appropriated to date.

ACCO identified legislative champions in Maryland and California. We worked to have childhood cancer legislation passed in Maryland (SB 51, and HB 775), with an associated $1 million appropriated by Governor Hogan for childhood cancer research at the University of Maryland’s School of Medicine.

ACCO staff also serve on numerous State Comprehensive Cancer Plan Working Groups to increase the number of states that include childhood cancer language and strategies in their cancer plans.

To date, $66 million has been appropriated for childhood cancer in four states because of ACCO’s “What About Kids” State Research Initiative. Donate to ACCO to Further this Mission.

What About Kids Research Projects

I’m also happy to share that significant research has already taken place because of the state-based childhood cancer appropriations in KY, MD, NJ, and PA!

Evidence-based childhood cancer research which is funded through the Kentucky Pediatric Cancer Research Trust Fund includes research focused on childhood acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), brain and spinal cord tumors, Ewing Sarcoma, Osteosarcoma, and Germline research, all taking place at the University of Kentucky. The University of Louisville is doing novel research focused on AML, CAR-T therapy, neuroblastoma, as well as the psychosocial impact roadmap of childhood cancer.

Maryland’s appropriation research plan is summarized in Maryland’s Cancer Moonshot in Pediatric Cancer Research. Like Kentucky, research will be focusing on types of childhood cancer with poorer prognosis including AML, and brain tumors. Their studies will be focused on structure-based drugs which degrade proteins that drive childhood leukemias, structure-based drugs which attack a novel, high-potential target molecule in pediatric cancers, biomaterials for controlled delivery of therapeutics for childhood leukemias and brain tumors, as well as ways to cross the blood-brain barrier to utilizing immunotherapy to treat pediatric brain tumors. There is such a need for new drug development for childhood cancer.

Childhood Cancer Research is also taking place at Children’s Hospital of Philadelphia, UPMC Children’s Hospital of Pittsburgh, Penn State Children’s Hospital, and Abramson at UPENN, as well as Rutgers Cancer Institute of New Jersey.

Are you looking for a way to donate to childhood cancer research? I’m personally asking that you please consider supporting ACCO’s What About Kids Research Initiative as we expand innovative state funding for childhood cancer research.

Together, we have shown that we can make a difference in providing hope to children with cancer and their families, through innovative state-based funding for childhood cancer research.

Warmly,

Ruth I Hoffman, BA, BEd, MPH

CEO, American Childhood Cancer Organization

DONATE TODAY!

THE WHITE HOUSE DECLARES SEPTEMBER AS CHILDHOOD CANCER AWARENESS MONTH IN 2022

Posted on September 2, 2022 by American Childhood Cancer Organization

During National Childhood Cancer Awareness Month, we remember the bright lives of children we have lost to this terrible disease. We recommit ourselves to finding new therapies to treat and defeat pediatric cancer. And we pledge to help children not only survive cancer but thrive.
Cancer remains the leading cause of death by disease for American children under the age of 15, and survivors often face physical, emotional, and cognitive challenges. Jill and I know from personal experience how a cancer diagnosis can be paralyzing. Worry and heartache cast a shadow on life’s joys, medical bills mount, and treatment paths are often confusing and difficult to absorb.
My Administration is committed to ending cancer as we know it. The First Lady and I reignited the 2016 Cancer Moonshot Initiative, and we have set a goal of cutting the cancer death rate by at least half over the next 25 years. I formed a new Cancer Cabinet to ensure that Federal agencies are coordinating cancer care programs, research, and development. And this year, my Administration created the first Advanced Research Projects Agency for Health (ARPA-H) with the single purpose of expediting breakthroughs in the prevention, detection, and treatment of deadly diseases. This is one of the pillars of the Unity Agenda I announced in my State of the Union Address.
Although significant progress has been made, many parents still have to advocate for their children’s basic care when insurance companies refuse to pay. My Administration is committed to strengthening the Affordable Care Act and Medicaid to help ensure access to preventive care screenings and life-saving treatments. Thanks to the American Rescue Plan’s provisions that build upon the Affordable Care Act and other actions my Administration has taken, 1 million children have gained health care coverage since I became President, helping to reverse the coverage losses during the previous Administration. And, as part of the Inflation Reduction Act, 13 million Americans will continue to save $800 per year on health insurance premiums — making lifesaving care affordable for millions of American families. My Administration is also committed to helping families navigate the flood of information that comes with a cancer diagnosis. For anyone experiencing uncertainty around risk factors, treatment options, or other opportunities for support, you can connect with a trained specialist at 1-800-4-CANCER or visit cancer.gov.
During this National Childhood Cancer Awareness Month, we recognize the health care professionals, researchers, private philanthropies, social support organizations, and patient advocacy groups who work tirelessly to protect our children’s well-being. We honor the courage of our children fighting pediatric cancers and the strength of their families and caregivers who never stop loving, supporting, and advocating for them. We rededicate ourselves to ensuring that every child can enjoy a long, healthy, and fulfilling life.
NOW, THEREFORE, I, JOSEPH R. BIDEN JR., President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2022 as National Childhood Cancer Awareness Month. I encourage citizens, government agencies, private businesses, nonprofit organizations, the media, and other interested groups to increase awareness of what Americans can do to support the fight against childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of August, in the year of our Lord two thousand twenty-two, and of the Independence of the United States of America the two hundred and forty-seventh.

JOSEPH R. BIDEN JR.

Gold Ribbon Hero: Iyra

Posted on August 21, 2022 by American Childhood Cancer Organization

Have you been curious about the little warrior shown in our giving season images? Meet Iyra, a brave 4-year-old rhabdomyosarcoma warrior.

In August, Iyra was featured in our GO GOLD® the Run campaign and her story ran on our blog and social media and we wanted to share some updates on Iyra’s journey.

In September 2022, Iyra completed her frontline treatment and is “thriving like a little girl must,” according to her mother, Divya. Since treatment ended, she has had one scan which has come back clean. Her family looks forward to getting her port removed next year.

This giving season, donate to ACCO, because kids like Iyra can’t fight cancer alone!

Meet Iyra, a 4 year old rhabdomyosarcoma warrior.

In November 2021, Iyra’s mother noticed blood in her urine. Iyra was taken to the pediatrician who suspected a urinary tract infection. They asked to keep an eye on it and if they didn’t subside to bring her back in. Just before Thanksgiving, Iyra was taken to the emergency room where she had an ultrasound and CT scan performed. Iyra’s parents, Divya and Rupesh were told that a cyst formation was found on her left kidney which could be cancerous. “After hearing ‘cancerous’ we were completely shocked.” Iyra was transferred to another facility for further testing.

Initially, doctors thought Iyra had a Wilms tumor and recommended a kidney removal. After further testing on the tumor, doctors discovered that Iyra had stage 3 rhabdomyosarcoma.

Currently, Iyra is undergoing chemotherapy at Johns Hopkins. She will undergo 14 21-day cycles of chemotherapy along with six weeks of radiation therapy. “She has a long road ahead of her and our lives have changed radically since her diagnosis. My husband and I feel completely devastated. Regardless of all this, Iyra is a fun child who loves to play with her sister. She is a very caring and strong girl. She reminds us that no matter how hard things get, we must learn to smile and keep a positive attitude.”

Iyra is an ambassador for ACCO’s GO GOLD® the RUN. Learn more by clicking here.

Learn more about rhabdomyosarcoma here.

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World’s First Unicycle Games Partners with the American Childhood Cancer Organization to GO GOLD®

Posted on August 17, 2022 by American Childhood Cancer Organization

BENTONVILLE, AR. (August 2022) – Amped Electric Games selected Bentonville, Arkansas for their first-ever International Electric Unicycle Games. The games promise to bring thrills during the weekend of September 2-4, 2022. Riders will come from around the world to compete in the Electric Unicycle Competition held at the Bentonville Fairgrounds in Bentonville, Arkansas.

“The Electric Unicycle is revolutionizing urban transportation and is the fastest growing new segment in green transportation,” states Nathan Pust, founder of REV Rides. “We are so excited for more people to experience this level of freedom in transportation and recreation.”

Amped Electric Games has chosen to GO GOLD® during the event with funds going to the American Childhood Cancer Organization. During the games, guests can purchase 50/50 raffle tickets to win one of two electric unicycles.

GO GOLD® events are held by hosts on behalf of The American Childhood Cancer Organization where they raise awareness and funds for childhood cancer. This particular event coincides with Childhood Cancer Awareness Month with hopes to amplify the mission. Childhood Cancer families in the Bentonville, AR area are invited to GO GOLD® and attend the event free of charge. Families can register here.

“We’re so excited to be working with Amped Electric Games to GO GOLD® during Childhood Cancer Awareness Month,” said Blair Scroggs, Public Relations Coordinator of The American Childhood Cancer Organization. “We hope that we can work with them for many years to come!”

EUC Racers led by Chris Iwinski are expected to reach speeds in excess of 55MPH on their large 22” diameter wheels. Not to be overshadowed, the VIP jumpers plan to attempt a jump over a school bus led by Mike Leahy on their lighter 18” diameter wheels. Each night spectators will have the opportunity to watch both the main events in racing and jumping as well as these VIP riders’ demonstrations.

According to Seth Johnson, “We are very excited for this event. We will be showcasing the top electric unicycle riders in the country. The events will include on-road and off-road races, jump competitions, obstacle courses, and freestyle. We encourage EUC riders of all levels to join us to meet our VIP riders and participate in these once-in-a-lifetime events.”

Learn more about Amped Electric Games here: https://www.ampedelectricgames.com/

About Amped Electric Games

Press Kit

eRideLife Media Contact: Seth Johnson, seth@eridelife.com

Seth Johnson is a Denver, Colorado-based personal electric vehicle (PEV) rider who rides and reviews vehicles on his YouTube channel eRideLife. He has been sponsored professionally by REV Rides since October 2021. Seth has traveled thousands of miles on his PEVs after discovering the physical and mental health benefits he experiences while riding. Seth believes the freedom and utility gained from PEVs can have a positive impact in any situation, he has even used them to help distribute food in disaster zones.

About The American Childhood Cancer Organization

ACCO Media Contact: Blair L. Scroggs, Public Relations Coordinator, bscroggs@acco.org

The American Childhood Cancer Organization was founded in 1970 by parents of children diagnosed with cancer. It is dedicated to making childhood cancer a national health priority through shaping policy, expanding research, raising awareness, and providing educational resources and innovative comfort programs to children with cancer, and their families. Please visit www.acco.org/donate

Gold Ribbon Hero: Charley

Posted on August 14, 2022 by American Childhood Cancer Organization

Meet Charley, a one year old acute myelogenous leukemia warrior.

When Charley started daycare she was always sick and in the doctors office. The doctor noticed that her soft spot was slightly swollen and sent her to the emergency room. Charley was diagnosed with viral meningitis which continued to worsen. The family was sent back to the emergency room where additional labs were taken. The doctor came into the room with a team of doctors and bent over to tell me “they were very concerned with Charley’s numbers, specifically the white blood numbers.”

“We were in shock. We wondered if our child was going to die and how we would move on. We wondered who would take care of our son at home,” remembers Sarah, Charley’s mother.

During her journey, Charley has been through many surgeries and procedures including bone marrow biopsies, intrathecal chemotherapy, central line placement, port placement, ovarian tissue removal and endoscopy. She had three rounds of chemotherapy and at this time, she is considered NED.

“Charley underwent three rounds of chemo and a stem cell transplant from her two year old brother who was a 10/10 match. She suffered many set backs along the way, but never stopped fighting. She rarely cried and brought a smile to so many in the halls during the 125 days she spent inpatient.”

Charley is currently attending weekly clinic visits for blood monitoring.

Learn more about leukemia by clicking here.

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Gold Ribbon Hero: Declan

Posted on August 7, 2022 by American Childhood Cancer Organization

Meet Declan, a T-Cell Lymphoblastic Lymphoma warrior.

In May 2021, Declan’s parents noticed large nodes on his neck. At the time, he was two and a half years old. Since Declan’s mom is a nurse, she was concerned because he showed no signs of infection. After weeks with doctors, Declan had scans that showed masses in his chest and abdomen. The doctors ordered a biopsy of his node and was diagnosed with T-Cell Lymphoblastic Lymphoma. At that time, he was hospitalized and started treatment. “As you can imagine, our world felt heavy. We had a few days off and got readmitted Monday for treatment after a confirmation had come back.”

Declan has a little over two years to continue his chemotherapy plan. He currently receives IV and oral chemotherapy as well as chemotherapy injected in his spine. Some weeks he gets chemo every day, multiple times a day.

“Declan has not been able to live a normal life or be a normal kid. He hasn’t been able to go to school or play groups. He is isolated when counts are low. It’s hard for him to express how he’s feeling but he’s strong through it all. Even on days where he spends all day receiving treatment, he still wants to run, jump, play and be kind to others. He is an amazing example of how we have a choice each day to bring happiness to others despite the circumstances. ”

Declan is an ambassador for ACCO’s GO GOLD® the RUN. Learn more by clicking here.

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ACCO Celebrates Year FOUR with Giant in the Community Bag Program

Posted on August 1, 2022 by American Childhood Cancer Organization

Beltsville, Maryland – For the FOURTH year in a row, the American Childhood Cancer Organization has been selected as a beneficiary of the Giant Food Community Bag Program for the month of August.

The Giant Food Community Bag Program, which launched in May 2019, is a reusable bag program that facilitates community support with the goal to make a difference in the communities where shoppers live and work.

ACCO was selected as the November beneficiary of the program by store leadership at the Giant Food located at the Beltsville location. ACCO will receive a $1 donation every time the $2.50 reusable Community Bag is purchased at this location during August, unless otherwise directed by the customer through the Giving Tag attached to the bag.

“This is great news, we are honored to be selected as the beneficiary of the Giant Food Community Bag Program. This will directly impact the lives of childhood cancer patients by helping provide crucial resources and advocacy programs to help ACCO further our mission.” said Ruth Hoffman, CEO of ACCO.

Visit the Giant Supermarket locations here:

Greenbelt Location: 6000 Greenbelt Road, Greenbelt MD

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. We’re dedicated to making childhood cancer a national health priority through shaping policy, supporting research, raising awareness and providing educational resources and innovative programs for children with cancer, survivors and their families. For more information, please visit www.acco.org/donate

For more information on the Giant Food Community Bag Program, visit giantfood.bags4mycause.com

Gold Ribbon Hero: Carson

Posted on July 24, 2022 by American Childhood Cancer Organization

Photography by Michelle Purdue.

Meet Carson, a 7 year old ovarian cancer warrior.

After having a week-long fever, Carson’s stomach became hard to the touch. Doctors discovered the tumor and the next morning Carson went in for surgery to remove the tumor and her ovary. Kristi and Clayton, Carson’s parents, were devastated and terrified for their daughter.

The surgery required doctors to make a very large incision. As a result, Carson had to be on an epidural for three days and many pain medications. Following her port placement surgery, Carson was very sick. To make matters worse, she started her first chemotherapy treatment. Carson had a severe allergic reaction to the chemotherapy but she powered through.

Photography by Michelle Purdue.

In total, Carson endured three rounds of chemo over four days inpatient. In February 2022, Carson was declared NED. She will continue monthly blood draws and quarterly CT scans to ensure her cancer stays in remission.

Carson is featured as an ambassador for ACCO’s GO GOLD® the RUN. Run for kids like Carson by clicking here.

Together, we can make a difference. Donate today, “because kids can’t fight cancer alone!®”

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7th Grader GOES GOLD® for Childhood Cancer

Posted on July 21, 2022 by American Childhood Cancer Organization

Meet Adriana, a rising 8th grader on a mission to help anyway she can. After her successful GO GOLD® fundraiser, Adriana is committed to doing more within her community to raise awareness for causes like childhood cancer.

In April, ACCO received a letter in the mail from the 13 year old asking to work together on a fundraiser for her year-long Gifted and Talented class project. Adriana’s teacher gave the 7th graders a selection of five topics to choose from.

The assignment: Out of the five topics, please choose a cause that you find interesting. Research the cause and contact a charity by writing a business letter to them explaining why you find their cause important. Host a fundraiser for community service in their honor and donate the proceeds. The final project will be due at the end of May.

When the topic of disease came up, Adriana thought childhood cancer was the perfect choice.

“I am really interested in diseases and the epidemiology. I wanted to learn more about childhood cancer, specifically because I like to learn more about cancer and what’s being done to find a cure.”

To raise awareness, Adriana put together a virtual fun-run in her community. She set up the website, collected runners’ information and organized swag distribution meetings. She shared it all around her community and was successful in collecting more than $200 in donations between 12 runners.

“Most of the information I got was from ACCO, especially the types of childhood cancer and international statistics. I chose ACCO because I found that it was part of Childhood Cancer International. Since I am interested in educating the poor in third world countries, this cause really stood out to me,” Adriana told ACCO.

“Adriana is a dedicated girl. She loves what she does – she gets so committed, it scares me. She doesn’t care if she practices [her viola] for three hours, she will do it until she gets it.” She picked up the viola in the 6th grade and started in the symphony ensemble and has quickly made her way to the orchestra ensemble,” Jacsy, Adriana’s mother said.

When Adriana was just two years old, her family immigrated to the United States. Shortly after moving, Jacsy was diagnosed with breast cancer. “It was the last day of second grade when I was diagnosed.” Three months after Jacsy’s diagnosis, Hurricane Harvey wiped out their first floor apartment and car. The family was left with nothing.

During Jacsy’s treatment, she wasn’t very active, and in 2021, Adriana was determined to change that. Pre-diagnosis, Jacsy was a marathoner who enjoyed running. When Adriana decided she wanted to join the cross country team, she saw that as an opportunity to encourage her mother to train with her so they could get in shape together. Her mother couldn’t have been more proud.

“Cancer was an easy decision [for Adriana] to choose for the project because of my diagnosis. She never left my side during treatment. She loves kids and always wants to help them.”

Adriana has high hopes for her future and possesses the drive to get her there. She plans to learn computer programming and wants to become an architect when she grows up. She is spending her summer in a swim camp and looks forward to her 8th grade year. Adriana plans on hosting another fundraiser for ACCO and has her sights set on attending Harvard in the future.

Interested in hosting your own GO GOLD® fundraiser like Adriana? Contact Blair today at bscroggs@acco.org or learn more here.