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Gold Ribbon Hero: Lilly

Gold Ribbon Hero: Lilly

Meet Lilly, a 12 year old astrocytoma warrior!

In February 2016, Lilly would not wake up. Lilly’s parents rushed her to the hospital and she was transferred to Pensacola Sacred Heart because it was out of their local hospital’s expertise. Pensacola Sacred Heart immediately admitted Lilly with a brain bleed and informed her parents that she would not make it through the night. Doctors ordered an MRI and found that there was a tumor in the center of her brain which was removed just a few days later. Unfortunately during surgery, Lilly’s optic nerve to the left eye was severed and left her with short term memory loss.

In total, Lilly underwent 17 surgeries, 12 on her right kidney, one brain surgery, and four port surgeries. “We never know what’s going to happen next and we never know how to plan for it” remembers Brandy, Lilly’s mother.

In February 2021, Lilly’s scans revealed that her tumor has grown and doctors are working on a new treatment plan to help. “She has a heart of gold and would rather tell her story to others to encourage them to continue to fight.”

Learn more about brain tumors: https://www.acco.org/blog/brain-tumors-in-children/

 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

Kids TOO: Advocating together for Childhood Cancer

For Immediate Release

ACCO and Momcology collaborate together to train and empower parents

WASHINGTON D.C., April 27, 2021 – Cancer is the number one disease cause of death for children in America. Most cancer research at the national and state level is dedicated to adult cancers. “Currently, 29 states have no mention of childhood cancer in their state cancer action plan as identified by the American Childhood Cancer Organization’s landscape analysis,” cited Ruth Hoffman, ACCO’s CEO. “With 46 kids diagnosed daily, it is time to include kids too.” The American Childhood Cancer Organization® (ACCO) and Momcology® are pleased to launch their joint Kids TOO initiative. The purpose of this collaboration is to train and empower parents so they can implement childhood cancer language in state cancer action plans, and advocate for the inclusion of pediatric cancer research in state cancer budgets.

For the past 50 years, advocacy has been at the heart of ACCO’s distinct mission. For nearly a decade, Momcology has been providing community-based support to childhood cancer families across the U.S. “We observed a significant need to connect parents to structured advocacy opportunities once they become aware that childhood cancer falls short within funding priorities.

Empowering parents to learn effective advocacy strategies from the seasoned experts at ACCO, and ultimately learn how to best share their own experiences, fits perfectly within Momcology’s peer support mission,” says Momcology Executive Director, Kim Buff.

ACCO and Momcology are excited to be working in this joint effort. Together, this collaboration will further both organizations’ missions by helping families interested in advocacy find the resources, knowledge, and the community they need to become powerful changemakers while shifting frustration into meaningful action for kids too.

For information on how to register for the state advocacy training, contact:

Jamie Bloyd, jbloyd@acco.org or Aubrey Riechard-Eline, areichard-eline@acco.org

For more information on Momcology please contact:

info@momcology.org


About The American Childhood Cancer Organization

Founded in 1970 by a dedicated group of parents of children with cancer, ACCO is dedicated to making childhood cancer a national child health priority through shaping policy, supporting research, raising awareness, and providing educational resources to children with cancer, survivors, and their families.

About Momcology

Momcology is a national support organization serving parents and primary caregivers of children with cancer through online, in-person, and hospital-based programming. With a strong commitment to collaborating with stakeholders, Momcology has become a trusted partner in community-building, dissemination of information, and advancing access to all areas of pediatric cancer support and care.

Gold Ribbon Hero: Mia

Meet Mia, an adventurous 7 year old rhabdomyosarcoma survivor.

When Mia exhibited swelling on her hip, her parents took notice and took her to the pediatrician. Halfway through Mia’s emergency MRI, her doctor stopped it to reveal a large mass. Mia was rushed to Children’s Hospital in Denver. “A rush of emotions, sheer pain, doubt and unknowing what to do. The initial response was to fall down on our knees and pray,” remembers Nathan, Mia’s father. On December 5, 2019, Mia was diagnosed with cancer. A week later, that cancer had a name – Stage 3 embroynal rhabdomyosarcoma located in her abdomen and pelvis.

Mia was barely able to walk and move due to pressure being put on her sciatic nerves.

Treatment began and consisted of VAC protocol for embryonal rhabdomyosarcoma, chemotherapy, and radiation. Mia endured several biopsy surgeries for the tumor and the bone marrow.

Mia loves to paint and play the harp. She is always looking for an adventure and enjoys hiking, camping and skiing.

As of February 2021, Mia had clear scans and will go again in May. Please help ACCO send well wishes to Mia and her family.

Follow Mia’s story here.

To learn more about rhabdomyosarcoma, click here.

 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

18Loop/American Childhood Cancer Organization (ACCO) Early Research Results Are Positive

18Loop/American Childhood Cancer Organization (ACCO) Early Research Results Are Positive

18Loop has announced that early results are in from the Joint Experimental Intervention Research Study (JEIRS) being run with the American Childhood Cancer Organization (ACCO). JEIRS is designed to measure the effect of Tripp Virtual Reality (VR) Stress Management software on pediatric cancer patients. The initial research participants all reported that their hospital stays had improved with the use of Tripp. Most indicated that their fight against cancer was better overall, and none reported adverse side effects. Furthermore, several children with cancer shared their VR experience with family, multiplying the impact of the technology. Many palliative care departments value family intervention, and this aspect of the work has been an added benefit.

18Loop Executive Director Greg Tarnacki has said that “collaborating with the ACCO, getting access to their wonderful kids with cancer and making a family impact has been the most rewarding part of working on this study. We are expecting to accomplish great things together in the future, with an eye on affecting survival rates in a world where VR is a universal intervention.”

Blair Cresawn, Public Relations Coordinator for the ACCO, stated: “Since 2020, The American Childhood Cancer Organization worked with 18Loop to circulate headsets to kids with cancer. This collaboration has been invaluable to kids participating in the program, and we have seen improvements in their mood. Some participants have family members that also benefit from the environment, making this program beneficial to the whole family.”

18Loop and the ACCO are planning to complete the first phase of JEIRS by June with a second phase to follow. Technology acquisition for this future phase is funded by Servier Pharmaceuticals, a partner of 18Loop and the ACCO. After joint research is gathered, analyzed and reported on, a VR distribution program will follow.

About 18Loop

18Loop, a 501(c)(3) charity (EIN 82-1498855), deploys Virtual Reality (VR) headsets to help children with cancer tolerate treatment, recover and thrive. 18Loop partners with the American Childhood Cancer Organization (ACCO), the world’s largest grassroots childhood cancer charity, to connect with its kids. 18Loop currently deploys Oculus VR headsets with Tripp Inc. environments that deliver Virtual Stress Management capabilities. 18Loop is Guidestar Platinum. Medical Extended Reality (MXr) has recently been recognized by the FDA.

10 Gifts Mom will LOVE this Mother’s Day

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We hope everyone is staying safe and strong during these uncertain times. Above is a selection of gifts, sure to put a smile on Mom’s face. Mother’s Day is May 9, 2021.

*Below you will find links to each product. Order soon to get in time for Mother’s Day!

  1. “Cup of Hope” – Scotty P’s Big Mug CoffeeACCO partnered with Scott Patterson, Gilmore Girl’s Luke Danes, to brew a special “Cup of Hope.” 
  2. “Cup of Hope” – Coordinating MugIf mom is a coffee lover, she will LOVE this coordinating mug. 
  3. What About Kids Travel MugHelp raise awareness with this “What About Kids” travel mug, Mom will love sipping her favorite drink from it while posing the question. 
  4. “No One is Stronger” Tote BagMoms need to carry stuff too! Grab this bag in three colors. 
  5. GO GOLD® Car MagnetMom can show support for ACCO and our nation’s littlest cancer warriors with this car magnet. 
  6. ACCO Logo Ultra Soft BlanketWrap Mom up in this cozy navy blue blanket.  
  7. “Save a Lifetime” ShirtThis feminine style is perfect for mom to raise awareness while looking pretty too! *multiple styles and colors available.
  8. “Every Child Leaves a Mark” MugThis limited edition mug is perfect for Mom. 
  9. ACCO Parent/Child Lapel PinMom will love this ribbon pin featuring a parent embracing their child. 
  10. ACCO Wings Ribbon Lapel PinWe’ve created a Gold Ribbon Wing Lapel Pin in memory of the children who are gone too soon. 

 

Gold Ribbon Hero Justin

Meet Justin, a 3 year old Acute Myelogenous Leukemia survivor!

At 10 weeks old, Justin had a cyst on his left wrist accompanied with blue and purple spots. His parents took him to Our Lady of the Lakes in Baton Rouge and then transferred to St. Jude. 

Justin underwent 5 rounds of chemotherapy and as a result he sustained chemical burns to his face and head. While in treatment, he had e. coli , sepsis and meningitis. As a result, he was put on a ventilator for three days. “We were scared our child was going to die,” remembers Jenna, Justin’s mother. 

At 10 months old, Justin was considered to have no evidence of disease and in 2021, he turned 3 years old. Please help ACCO send well wishes to Justin and his family! 

Follow Justin’s story @BabyJustinsJourney on Facebook.

Learn more about AML: https://www.acco.org/childhood-leukemias/

 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Corbin

Meet Corbin, a 13 year old neuroblastoma warrior.

Corbin’s battle with neuroblastoma began as an 11 year old fifth grader in October 2018. After a routine annual well-check, the pediatrician found a mass in his abdomen. Since Corbin had shown no symptoms, the family was not expecting anything to come out of it. Scans and tests were performed to conclude that surgery was necessary to remove the baseball sized tumor. The doctor was able to get 100% of the tumor and no further treatment was necessary. The tumor was confirmed as a malignant ganglioneuroblastoma.

A follow up treatment plan was put into place and every three months, Corbin would undergo scans. In January 2019, Corbin’s first follow up scans were clear, as expected. “I remember walking out of the clinic room with such happiness and joy each time we received good news, then we would turn a corner in the hallway and see a parent crying. I was heartbroken for them knowing they did not get the news they wanted to hear. I never wanted to be in their shoes. I could not imagine it. My heart ached for them.”

Next scans were scheduled for April 2019 and Corbin had relapsed. “We arrived and I could tell something different was happening. The vibe was off. Our nurse seemed anxious and I was asked if anyone else was on their way to join me and Corbin for this appointment” remembers Corbin’s mother, Angela. They sat in the examination room and Angela was asked to step out of the room. She was greeted by several oncology team members. “I knew. I was shaking. I was dying inside. They told me. The thing that was not supposed to happen, happened.”

The news shocked his mother to her core and when it came to telling Corbin, she pulled herself together to reassure him he would beat cancer. “This was the first time during this entire cancer experience over the past six months I witnessed his eyes well up and tears begin to stream down his face. My heart was shattered, but I was strong for him.”

“Corbin’s strength has been amazing. He knows he is battling a very serious illness and facing a long, difficult, and frightening road ahead to clear him of this cancer. Even with all of this, he still thinks about others. He delivers meals for Meals On Wheels when time allows and was even out delivering the day before he went in for his second cycle of chemotherapy. Corbin is my hero. He and his brother are the strongest kids I know. No kids should have to go through this. Never. Ever.”

In March 2021, Corbin’s scans revealed a suspicious spot on his spine. He will soon start treatment to get rid of the spot on his spine.

Corbin loves bike riding, hover boarding, swimming and hanging out with family and friends. In February 2021, Corbin competed on his school gymnastics team in the rings!
Please help ACCO in sending well wishes Corbin’s way!

Follow Corbin’s journey @CorbinBeatsCancer on Facebook.

Learn more about neuroblastoma by clicking here: https://www.acco.org/neuroblastoma/

 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

JoySuds Launches Coloring Contest To Raise Money For ACCO!

GREENWICH, Conn.April 1, 2021 /PRNewswire/ — JoySuds ® LLC, owner of the Joy® and Cream Suds® dish detergent brands, has launched another adorable social media contest that aims not just to bring some joy to our feeds, but help children process negative emotions in the age of COVID.

According to Georgetown Behavioral Health Institute, drawing, which is categorized under expressive art therapy, has been shown to help children deal with negative situations, while positively affecting function, mood, cognition and behavior.

JoySuds is running with these findings for its new social media campaign. For the month of April, the #JoyColoringContest asks children to draw what brings them joy. Parents can download and print the JoySuds coloring template off its website, then post their child’s drawing to Facebook to enter for a chance to win $1,000 Visa gift card along with a $1,000 donation in their name to the American Childhood Cancer Organization (ACCO). “Children fighting cancer today are also faced with the additional physical and emotional challenges associated with COVID,” says Ruth Hoffman, CEO of ACCO. “ACCO is grateful to JoySuds for their support in bringing joy to these brave children.”

JoySuds hopes this contest will not only give kids a positive way to express their emotions, but bring awareness to the American Childhood Cancer Organization, a non-profit that JoySuds is proud to support. With 46 children diagnosed with cancer in the U.S. every day, JoySuds hopes to bring the work of this important charity to the forefront of people’s minds, promoting donations that will help facilitate research and resources for the ACCO.

To find out more about the contest please visit: https://www.joysuds.com/joy-coloring-contest/

About JoySuds®, LLC:

JoySuds®, LLC was formed in November 2019 to acquire the Joy and Cream Suds brands for the US, Canada and certain other Latin American and Caribbean territories from the Procter & Gamble Company. JoySuds® is focused on reinvigorating the distribution and product offerings of both the Joy and Cream Suds brands while building on their rich histories of innovation and performance.

Gold Ribbon Hero: Indy

Meet Indy, a stage 3 wilm’s tumor survivor!

At three months old, Elliott, or “Indy” for short, was getting a bath when his parents noticed a hard lump on the left side of his abdomen.  Sterling and Myra, Indy’s parents, took him to the pediatrician the next day and were quickly referred to the hospital where a bed was waiting. “We arrived at the hospital more worried than we were before and they sent in a medical team to visit with us” Sterling remembered. Several tests were performed and after three hours, the oncologist entered their room and told Indy’s parents that he saw a mass on his scans but wasn’t sure it was cancerous. 

The oncologist suggested that Indy needed surgery to further inspect the mass and later confirmed that it was a stage 3 Wilm’s tumor. At the time of diagnosis, Indy’s tumor was the size of an eggplant. The surgeons were unable to remove the full tumor so Indy had to endure daily radiation for one week and weekly chemotherapy for six months.  

“Elliot was dealt a hand no person asks for. He stayed a happy kid throughout his multiple rounds of chemo and radiation. He continued to smile through every hurdle, every sedation, and every doctor visit. His smile gave us peace when we were hurting the most” Sterling said.  

As a side effect to the treatments, Indy developed food allergies which made it hard to tolerate food. He would get sick, have diarrhea and fevers. Indy’s feet started turning inward as a result of treatment which led his parents to take him to an orthopedist. The doctor put him in casts for four weeks in an effort to help straighten his feet out. Now, he’s able to run and play with his big brother! On February 27, 2021, Indy celebrated two years of chemotherapy completion.

In September 2020, Sterling held a fundraiser for ACCO. He hosted a year-long virtual race and even made his own trailer! He planned to participate in the Disney marathon in Indy’s honor and continued to raise money (and run, virtually) long after the race was cancelled. Sterling continues to help raise money for childhood cancer and advocate in honor of Indy “because the run for childhood cancer doesn’t end in September.” 

Learn more about Wilm’s Tumors here: https://www.acco.org/wilms-tumor-and-other-childhood-kidney-tumors/

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

ACCO + 18Loop VR Headset Study Early Results Summary

When pediatric cancer patient Elizabeth first tried Virtual Reality (VR), she exclaimed
that it was “amazing and exciting.” She didn’t realize it at first, but VR would prove to be
an aid in the hospital for her and her fellow study participants. Elizabeth is the first of
seven teens to test VR in 18Loop and the American Childhood Cancer
Organization’s (ACCO) Joint Experimental Intervention Research Study (JEIRS).
Together, 18Loop and the ACCO are seeking to prove that VR is safe and effective in
aiding kids with cancer in their treatment and recovery. The research team is working
closely with Tripp, a startup xR company that delivers Virtual Stress Management in a
comforting high tech meditative package. This week, 18Loop and the ACCO are sharing
early data from JEIRS, and it looks like they are on track. Tripp and VR as a whole are
an early success with the kids.

One of the key data points derived from the survey sent to the first seven 18Loop/ACCO
JEIRS kids was that 100% of them felt VR made for a better hospital stay. Six of
seven felt that Tripp’s environment improved their mood and six of seven also felt
that VR as a whole made them better off. More than half of the study participants felt
that Tripp helped with pain, and all used the software at least once a week. Luke, an
ACCO kid, pointed out that Tripp was effective, but that VR was also a big help in
fighting boredom in the hospital. It provides access to another world that the kids love to
explore.

With VR, you can get a multi-player effect, and family can join in. Successful family
intervention is prized in the Palliative Care community and VR offers an opportunity to
reach families as a whole. The 18Loop/ACCO kids (including mothers and siblings)
used a variety of VR games successfully, all while maintaining a regimen with Tripp to
affect mood. These preliminary metrics and observations from our kids are encouraging,
albeit from a small sample size. 18Loop plans to distribute fifteen total VR

headsets with access to Tripp in the first phase of JEIRS. A second phase is currently
being planned and funded, with an eye on younger participants.

18Loop is grateful for its partnership with the ACCO, and credits their organization for
providing access and joint management oversight for JEIRS. Ruth Hoffman, ACCO
CEO, has had many ideas about the application of VR and has given 18Loop the green
light to implement them. Blair Cresawn, 18Loop’s day to day contact at the ACCO, has
tirelessly worked with 18Loop/ACCO kids to ensure that the technology is being
received and reviewed effectively. Our calls with JEIRS kids have been lively and
informative. Once we connect through the ACCO, we feel a sense of larger community
within which we have begun to support Advocacy efforts alongside our partners.

It is expected that the initial research done on VR can eventually lead to technology
distribution to a larger portion of the 16,000 kids that get diagnosed with pediatric
cancer each year. Tripp has contributed to 18Loop’s work as well, donating five Oculus
headsets for testing and offering support with technology monitoring and adoption. We
are happy to work with CEO Nanea Reeves, whose generosity and leadership have
benefitted us greatly. Please take a look at the preliminary 18Loop/ACCO JEIRS study  results below and support us in helping kids with cancer with VR.

Learn more about the 18Loop + ACCO Partnership here. If you are interested in joining our 18Loop study, please email Blair for more information at bcresawn@acco.org.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO