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.

Gold Ribbon Hero: Preston C.

Posted on July 17, 2022 by American Childhood Cancer Organization

Meet Preston, a Desmoplastic Small Round Cell Tumor (DSRCT) hero.

On Christmas Eve in 2015, Preston was rushed to the emergency room after his mother noticed his stomach was distended and he stopped eating. After an x-ray, MRI and ultrasound, the doctor took Michelle into the hallway and told her she had a very sick boy. The doctor showed Michelle a large mass in his abdomen. “It was terrifying.” The family was given the choice to take Preston to the nearest children’s hospital or travel by ambulance. Michelle drove Preston in an effort to not scare him. They arrived at the hospital and after 45 minutes, the oncology doctors confirmed that Preston had cancer. He had a biopsy the next day which revealed a rare and terminal cancer called DSRCT.

During Preston’s cancer journey, he endured 54 rounds of chemotherapies and 45 sessions of radiation in his abdominal area. He underwent a clinical trial and tried to get into another trial in September, however was unable to join because cancer had spread. In total, Preston had nine surgeries and cancer returned six times.

“Everything changed overnight and he missed so much in life and school.” In March 2022, Preston was admitted to the hospital and doctors told the family that there were no more treatments available to him anymore. Preston’s wish was to come home from the long battle and live the rest of his remaining life in the comfort of his own home surrounded by friends and family.

Preston’s community surrounded him on March 12, 2022 in a surprise graduation ceremony. “He wanted to be a nurse and help kids because he can relate to what they are going through. Now that he’s facing death, he is facing that with such grace.” Preston gained his wings in April 2022, surrounded by family and friends.

Learn more about sarcomas by clicking here.

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

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Gold Ribbon Hero: Lewis

Posted on July 10, 2022 by American Childhood Cancer Organization

Meet Lewis, a Non-Rhabdomyosarcoma CIC-DUX4 warrior.

The day before diagnosis, Lewis’ mother, Dynae had just given birth and was in the hospital recovering. Her husband, LT had noticed a quarter sized lump on the mid-inner thigh of Lewis’ leg. Lewis had informed his dad that it itched, rather than hurt. Lewis was taken to the emergency room after suspecting it was a severe reaction to a bug or spider bite. The ER reassured the parents that it was nothing after cutting into the mass and nothing coming out.

Call it mothers intuition, but Dynae did not agree with the abscess diagnosis. Lewis’ pediatrician immediately got him in to see a pediatric surgeon. The surgeon agreed that the lump needed to be removed and sent to pathology. Surgery was delayed two weeks after Lewis tested positive for Covid, despite showing no symptoms. On July 14, 2020, the pathology revealed an unknown type of sarcoma. On July 16, the family met with the oncologist for the first time. Lewis’ tumor was genetically tested to determine what type of sarcoma was present. At the time, they thought it was Ewing’s sarcoma. Lewis was scheduled for scans and a port was placed. “When the surgeon told us it was a sarcoma and that oncology would tell us more, it sounded like the mom in Peanuts. Nothing got through my brain. It was very much a blur” remembers Dynae.

On August 12, 2020, Lewis was diagnosed with Non-Rhabdomyosarcoma CIC-DUX4, a very rare type of sarcoma. There is no specific treatment for this particular type, so Lewis was treated with a modified aggressive Ewing’s sarcoma treatment.

Treatment started 7 days later on August 19. After his first chemotherapy treatment, he began losing his hair. He lost his appetite and was very sick following his first chemo. Other side effects like neutropenic fevers landed him in the hospital for a few days. In December 2020, Lewis had a surgery to remove four places. Of the four, only one was a chemotherapy resistant active tumor. In May of 2021, Lewis started radiation and only had minimal redness at the site. He liked the radiation machine. After treatment scans have shown no new tumors so far despite the high recurrence rate of his cancer.

During Lewis’ chemotherapy treatment, his parents noticed a change in his behavior. From withholding stool to attitude changes, they knew he was just not acting like himself. After seeing a psychologist, psychiatrist and behavioral health specialist, it was found that Lewis was diagnosed with Autism Spectrum Disorder Level 1, formerly Asperger’s). Doctors believed that the neurotoxicity in one of the chemotherapy drugs had exacerbated a previous mild case of ASD Level 1.

Currently, Lewis is doing well and continues to have post treatment scans.

Gold Ribbon Hero: Kashton

Posted on June 26, 2022 by American Childhood Cancer Organization

Kashton was diagnosed with acute lymphoblastic leukemia in November of 2020. Doctors initially thought it was the stomach flu but finally discovered that it was ALL after three months. Currently, Kashton is on a daily chemotherapy medication and attends monthly clinic visits every month. His mom said, “throughout this entire ordeal, Kashton has been so resilient, brave, happy and strong. He understands that his chemo is the medicine that is making him better.” Kashton and his family look forward to treatment completion in 2023.

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

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Gold Ribbon Hero: Eileen

Posted on June 19, 2022 by American Childhood Cancer Organization

Meet Eileen, a 6 year old T-Cell Non Hodgkin’s lymphoma warrior.

In mid September 2021, Eileen woke up with a low grade fever and complained of stomach pain and difficulty breathing. She was rushed to urgent care by her parents and diagnosed the same day with T-Cell Non Hodgkin’s Lymphoma. The family was shocked with the diagnosis and was immediately sad, stressed and fearful of what was to come.

Treatment started immediately with chemotherapy and is currently in remission. “Eileen’s has been fighting the good fight for 8 months now. We’ve had many ups and downs, but she always braves every single chemo, procedure, clinic visit, port access, and shots with a huge smile (after a few tears.)”

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

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