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10 Gifts Dad will LOVE this Father’s Day

10 Gifts Dad will LOVE this Father’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 Dad’s face. Father’s Day is June 20, 2021.

*Below you will find links to each product. Order soon to get in time for  Father’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 dad 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, Dad will love sipping her favorite drink from it while posing the question. 
  4. “No One is Stronger” Tote BagDads need to carry stuff too! Grab this bag in three colors. 
  5. GO GOLD® Car MagnetDad can show support for ACCO and our nation’s littlest cancer warriors with this car magnet. 
  6. ACCO Logo Ultra Soft BlanketWrap Dad up in this cozy navy blue blanket.  
  7. ACCO Shirts– Our collection of shirts are sure to make Dad happy. Purchase a custom shirt through September 30 for the Childhood Cancer Awareness Shirt campaign, or right from our ACCO Bonfire store. *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: Kimberly

Meet Kimberly, a forever 16 year old stage 4 rhabdomyosarcoma hero.

In June of 2018, Kimberly started to complain of back pain, so her parents took her to the doctor. Her doctor referred her to a neurosurgeon. Kimberly was diagnosed with piriformis syndrome, a muscle spasm syndrome and treated with medication. Her follow up was set for July 2018. In early July, Kimberly collapsed while walking down her hallway. She panicked, cried and could not get up or walk. After more difficulties walking and getting up, she was taken to the emergency room. Kimberly was admitted to the hospital and results were sent to St. Jude. 

On July 20, 2018, Kimberly was diagnosed with stage 4 alveolar rhabdomyosarcoma. She was given a 50% chance of survival over a five year period of time. 

Treatment started immediately. “She spent almost all of her days living in hell in the hospital, going through chemotherapy and other treatments. She lost her hair and would get so sick she could hardly move. But, she would bounce back up. She was 14 when she was diagnosed and spent her birthday and Halloween in the hospital. She was lucky enough to get out just before Christmas” remembers Tracy, Kimberly’s mother. Tracy was determined to give her the best life she could so the family took a few memorable family vacations. 

While the family was on Kimberly’s wish trip, they received a call from the doctors that the cancer had spread to her pancreas. Treatment would start when they got back. Kimberly underwent cyber knife radiation which helped get rid of the spots on her pancreas. After three months, Kimberly went in for routine scans which revealed the cancer spread in her pancreas, lymph nodes, throughout her abdomen and bones. Doctors told the family there were no more treatment options and after a couple of months, she started getting weaker and having more pain. Hospice was brought in to help keep her comfortable and then she went downhill fast. On March 8, 2020, Kimberly gained her wings. 

Kimberly was remembered as having a “heart of gold and always trying to help others. She always tried to see the best in everyone.” 

Learn more about sarcomas here

Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Jace

 

Meet Jace, a Kansas State University student and DIPG warrior.

On May 17, 2019, Jace was diagnosed with an inoperable brain tumor which helped to explain his peripheral double vision. He was treated immediately with steroids and radiation the next day. Imaging was initially done on Jace at University of Texas MD Anderson Cancer Center because doctors didn’t think it was DIPG, at first. His case was reviewed at Memorial Sloan Kettering and when he visited the University of California in San Francisco (UCSF), the tumor board noticed very common mutations of DIPG.

Jace has worked to overcome right side weakness in his fine motor skills, left eye double vision, left facial numbness and the feeling that his right leg is always freezing. For treatment, Jace endured 30 rounds of radiation and is on the ONC201 trial which started in September 2019. In January of 2021, Jace completed his first Car T cell trial for GD2 and his tumor shrunk between 25-50%. Jace decided to be the first patient to undergo this trial, against doctors recommendations. “Jace believes that collaboration is so important to research and to emotionally support patients and their families” said Lisa, Jace’s mother. In May of 2021, Jace received his fourth round of Car T cell therapy.

During his cancer journey, Jace has not focused on himself. “He never asked, ‘why me?’ and at diagnosis, he asked his doctor to tell him how long he had to live not because he was afraid to die, but he needed to know how long he had to make an impact” said Lisa. Jace is an active advocate for DIPG and coined the phrase, “I can’t die, I’m busy.” He also uses the popular hashtag #DIPGWon’tWait. He consistently shares his journey on Facebook so other patients can gather information about his journey.

Jace reflects on his journey saying, “one of the hardest things for me to wrap my head around is how to leave my closest friends and family better than when I found them. How can I make sure, if this treatment does not keep me alive until a cure comes, how will the people I love not suffer in the aftermath.  There is just no real good way to do that.  You cannot LIVE waiting to die.  So for me, I must choose to simply LIVE and make sure each person knows how important they are in my life.”

“Most notably, Jace rallied the foundations to fund over $700,000 to continue an Expanded Access Protocol for ONC201 medication that Jace used for 11 months. This EAP is intended to provide access to patients who otherwise would not have access to a trial with ONC201. Jace is at the forefront in the development of a patient navigation and data collection continuum for DIPG/DMG that is unfolding in 2021-2022 leveraging the talents of foundations, clinician consortiums and the Children Brain Tumor Network. He supports efforts to fund Car T Cell research and trials in DIPG/DMG. Jace’s advocacy efforts gained the attention of Reed Jobs, Director of Emerson Collective – Health last fall. Jace began an internship reporting to Reed on policy reform for rare cancers. He often shares encouragement through text, phone and video with fellow DIPG patients and especially younger children” says Lisa.

Jace was the first person selected as a University of Kansas Business Scholar and to the Law School Accelerated Education Program. Jace plans on graduating from Kansas State University in 2022 with his degree in Business with a pre law emphasis.

UPDATE on Jace: On July 3, 2021 at 11:22pm Jace gained his angel wings. He fought DIPG for 25 months with a positive attitude saying “I can’t die, I’m too busy.” His parents remain committed to fighting DIPG.

Jace was diagnosed on DIPG Awareness Day in 2019 and this year, he celebrated 2 years of his diagnosis with his family. Learn more about DIPG Awareness day here.

Follow Jace’s journey with DIPG here.

Learn more about Brain Tumors here.

Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

What’s Needed to Improve Pediatric Cancer Treatment

Pediatric cancer treatment has come a long way in the last century. Back in the 1950s, a childhood cancer diagnosis was almost always fatal. But today, thanks to decades of childhood cancer research, 4 out of 5 of children diagnosed with cancer will survive. That’s great news, but as any childhood cancer survivor can tell you, that cure comes at a cost.

Today’s pediatric cancer treatments, although often effective at killing cancer, are very harsh on small, growing bodies, with side effects ranging from brain damage and hearing damage to extreme sickness or even death. Then there are the late effects — among them heart disease, infertility and even secondary cancers — that can surface years down the line. Two-thirds of survivors have a chronic health problem as a result of their treatment, and 1 in 4 will face a severe or life-threatening late effect. There’s still a long way to go until every child is cured — and until a cure doesn’t come at such a price.

So what’s the key to improving pediatric cancer treatment? More pediatric cancer research. Here’s why.

Cancer treatment isn’t “one size fits all.”

Pediatric cancer isn’t just one type of cancer. There are hundreds of types and subtypes of childhood cancer, and no two can be treated exactly the same. In fact, even the same type of cancer can behave differently in different children. There is no blanket approach to cancer treatment, and there probably won’t be a silver bullet that can cure every cancer. It’s not as simple as taking a drug that works for leukemia and giving it to children with brain tumors — each type of cancer needs its own specialized research.

There’s a lot we still don’t know about childhood cancer.

Childhood cancer is complicated, and childhood cancer research is complicated. For each of the many different types of childhood cancer, researchers need to understand what drives the cancers in order to figure out what therapies might target those drivers. Then they have to test those therapies first in the lab, and then in real children, whose bodies often behave quite differently than cells in a petri dish. This “bench to bedside” process, as it’s called, can take years — sometimes decades — of hard work, trial after trial, before researchers land on a new therapy that’s both safe and effective for children.

Children are not small adults.

The bulk of cancer research funding in the U.S. comes from the federal government, but the amount allotted for childhood cancers is paltry compared to the share for adult cancers. Talented would-be childhood cancer researchers turn away from the field in favor of more lucrative research prospects, and those who remain are left scrambling to find funding for their projects. But children’s developing bodies are different than adults’ bodies, and the cancers that affect them are different, too. It’s not enough to do more research for adult cancers — children need more research specifically for the cancers that affect them.

Not all children with cancer can be cured — yet.

Despite all the progress we’ve made, cancer kills more children in the U.S. than any other disease — in fact, more than many other top diseases combined. While some types of childhood cancer have cure rates above 90%, there are some, like DIPG, which no child has ever survived. And sometimes, even once the cancer goes away, it can come back — and it’s almost always harder to cure the second or third time around. Every child deserves to grow up and live a life of their own design, but we have a long way to go until that’s a reality for all children with cancer.

At the ACCO, we believe in the power of research, the importance of advocacy and the value of programs that help children and families affected by childhood cancer. When you give to the ACCO, you’re supporting all three. Please donate today.

Together, we can make a difference.

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

Donate to ACCO

Gold Ribbon Hero: Declan V.

Meet Declan, a 5 year old Ganglioglioma warrior.

When Declan was 3 years old, he was diagnosed with Ganglioglioma. Declan started having sudden onset seizures and was rushed to the emergency room by his mother, Stephanie. “As a nurse, I knew immediately that something neurological was going on.” 

“While in the recovery room three doctors approached us. We stood for the information and they asked if they could take us to a separate room. My heart dropped so far into my gut. As we walked out of the recovery room I looked at Jeremy [my husband] and said “This is not good.” I’ve never in my life wished I had been so wrong about being so right. The doctors shut the door and the first thing they said was “I’m sorry. We did see a large tumor on his MRI.” I looked at Jeremy and we made eye contact and then everything is a blur. I heard the word tumor multiple times, biopsy a few times, and I honestly can’t tell you much more that went on in that room. What I do know is that was the moment the universe strapped me into a rollercoaster of negative and optimistic, over and over again.” 

Declan has received 18 months of chemotherapy and several surgeries to help remove the section of his tumor that is causing the seizures. Epilepsy has been the biggest obstacle for Declan and his family. He “gets an aura and will call out “SEIZURE.” Teagan [his brother] comes running yelling ‘Declan is having a seizure!’ Declan thinks it’s funny at times to call out seizure when he knows he isn’t having a seizure.” 

Declan’s diagnosis has changed my life, and in many ways it has helped me become a better mom, wife, and nurse. In the middle of caring for my son, and in the middle of a pandemic, as a nurse, I changed careers. I now work as an oncology RN at Brigham and Women’s Hospital on the DFCI inpatient unit. I absolutely love going to work each day, and take care of these patients who have the unfortunate burden of cancer. I can relate in ways that others can’t and I form bonds with my patients through sharing our stories of our own journey.” 

Declan continues to have daily seizures and just recently had a right temporal parietal craniotomy in hopes of removing the part of the tumor. “We have a long road ahead of us. It is with a heavy heart that we let people know that Declan’s surgery was not successful in eliminating his seizures. We are now faced with a new path of trying to get seizures under control.” Doctors have given the family three options in hopes of getting his seizures under control. Declan’s doctors say that unfortunately his seizures will never go away.

He “has a unique awareness of his medical status and is very open about his diagnosis. He tells people that he is special because he has a brain tumor and seizures. He tells his story with pride.” The family as a whole has decided to turn Declan’s diagnosis into a positive by helping to raise money for childhood cancer. Stephanie competed in the Pan Mass Challenge with Team Kermit and last year, the team raised more than $500,000 for pediatric brain and spinal cord tumors. 

Follow Declan’s story here: Deck’s Clan

Learn more about Brain Tumors here: https://www.acco.org/brain-tumor-awareness-month/

Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Victoria

Meet Victoria, a gliosarcoma hero taken too soon.

After feeling weak accompanied by headaches and vomiting, Victoria was taken to the emergency room. The ER doctors found a large mass in her frontal lobe and diagnosed her with high grade gliosarcoma brain cancer in April of 2012 at 11 years old. During Victoria’s journey, she endured five brain surgeries and seven other surgeries. She fought for four years with a brave spirit and positive attitude.

In November of 2016, Victoria was taken too soon at 15 years old. Victoria’s Sparks of Joy was born and her legacy brings joy and comfort to others during their battle.

Learn more about Brain Tumors here: https://www.acco.org/brain-tumor-awareness-month/

 

Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

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

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.