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Gold Ribbon Hero: Liam

Author Archives: American Childhood Cancer Organization

Gold Ribbon Hero: Liam

Posted on June 4, 2023 by American Childhood Cancer Organization

Meet Liam, an acute lymphoblastic leukemia warrior and 2023 ACCO Ambassador.

“It was a normal day and he was playing. Around 5:30 that night, we noticed pin prick sized bruising all over his body and he was getting nose bleeds. His doctor told us to take him to the emergency room,” said Jayme, Liam’s mother. “Liam’s cancer diagnosis was a complete surprise to us.” 

On July 13, 2022, Liam was diagnosed with High Risk B-Cell Acute Lymphoblastic Leukemia. He was immediately transferred to Lurie Children’s in Chicago to start chemotherapy. Liam is currently on weekly chemotherapy and has undergone multiple bone marrow biopsies and a port placement surgery. 

Since Liam’s cancer diagnosis, ‘we are able to live life in a more full way. One of our triumphs is watching him fight this cancer.” 

Liam is currently one of ACCO’s Ambassadors and is raising awareness for childhood cancer as part of our GO GOLD® the RUN. 

Learn more about ALL by clicking here.

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

 

Gold Ribbon Hero: Addalyn

Posted on May 14, 2023 by American Childhood Cancer Organization

 

Meet Addalyn, a DIPG hero.

In 2021, Addalyn began vomiting accompanied by excruciating headaches, vision and balance issues. “For two weeks, we were in and out of the emergency room with so many doctor appointments. I was calling and pleading to get someone to take me seriously because there was something seriously wrong with my daughter.” After two weeks, “I begged them to give Addie an MRI and they finally did. The results: she had an inoperable and incurable brain tumor and was given six to nine months to live. I was in shock, disbelief and I’m heartbroken” said Renee, Addie’s mother. 

Addalyn’s mom was finally given answers and a diagnosis, diffuse intrinsic pontine glioma (DIPG). “Devastated. Our world came crashing down. I began grieving the loss of my daughter because I knew she would never be the same.” 

Addie’s mom entered Addalyn into a clinical trial. She had 30 sessions of radiation and then took an oral chemotherapy for six months. After the progression, she went through another clinical trial that consisted of three higher power radiation treatments. Addalyn bravely fought DIPG for 14 months and on April 3, 2022, Addie passed away. 

Addalyn was a “brilliant artist. Her favorite thing was dogs. She had dreamed of one day becoming a vet and incorporating art into her job somehow.” According to her family, she never stopped smiling and told jokes as long as she could. 

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

Learn more about DIPG here.

Gold Ribbon Hero: Neev

Posted on May 7, 2023 by American Childhood Cancer Organization

Meet Neev, a DIPG hero. 

When Neev had redness in his eyes and became wobbly, his parents took notice. “We had to take him to urgent care for a viral eye infection. The doctor rushed us to the emergency room and upon arrival, they took us in for a CT scan and confirmed a mass on his brain stem” remembers his mother, Misha. In August of 2020, Neev was diagnosed with Diffuse Intrinsic Pontine Glioma. 

Neev underwent two rounds of radiation, three chemotherapy agents and a brain biopsy. He endured abdominal surgery to place and remove a pump. After losing all bodily functions, he started intense rehabilitation and regained a few functions back. At that point, he went through experimental chemotherapy and lost all functions he had regained. Through it all, Neev and his family remained optimistic and determined. 

On November 30, 2021, Neev passed away surrounded by family. His family started a Go Fund Me page shortly after he was diagnosed to help with the medical expenses and with the money that wasn’t used, the family donated it to fund DIPG research. 

In December 2022, Neev’s brother, Rayann held a toy drive and donated the toys to kids undergoing treatment at UCSF Benihoff Children’s Hospital. 

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

Learn more about DIPG here.

Gold Ribbon Hero: Zander

Posted on April 9, 2023 by American Childhood Cancer Organization

 

Meet Zander, an acute lymphoblastic leukemia warrior.

In May 2022, Zander exhibited swollen lymph nodes and petechiae, small pinpoint round spots that appear on the skin as a result of bleeding. “We knew something was wrong and he was off,” said his mother, Melissa. After weeks of trying to get a diagnosis, his parents drove him out of town and he was diagnosed with leukemia almost immediately. 

“He is three years old and probably the best patient. He is a pro at getting assessed and poked.” Zander is currently in the delayed intensification phase of his treatment and endures chemotherapy and getting poked for CBC’s. 

Zander is currently in remission and his mom said she is, “so proud of my warrior.” 

 

GO GOLD® GALA TO BENEFIT PEDIATRIC CANCER RESEARCH

Posted on April 3, 2023 by American Childhood Cancer Organization

Event will be hosted in November at Boston Harbor Hotel in partnership with
the American Childhood Cancer Organization

BOSTON, Mass. – April 3, 2023 – In conjunction with the American Childhood Cancer Organization (ACCO), Liz Adams, Boston-based VP of Marketing & Events at The Beyond Collection, will be hosting a GO GOLD® Gala benefit to support funding for childhood cancer research. This is a personal cause for the executive, as the gala is being held in honor of her daughter Lily, a six-year-old B-Cell Acute Lymphoblastic Leukemia warrior. The gold ribbon is the universal symbol representing childhood cancer, and the event will be held on Saturday, November 18, 2023, at the Boston Harbor Hotel.

“When my daughter was diagnosed at just five years old with leukemia, I was devastated and immediately started searching for answers,” shared Liz. “Unfortunately, the response I was getting from doctors was that this was just bad luck. I can’t accept that and know that I need to do my part to support the amazing research efforts and specialized resources provided by ACCO. That was the inspiration for hosting this gala fundraiser, which I hope can be an impactful event for families in similar situations.”

According to studies, Massachusetts has the ninth highest rate of childhood brain and central nervous system tumors in the nation, the ninth highest rate of childhood lymphoma and ranks 11th highest overall in the rate of childhood cancer. In the last five years, ACCO has secured $72.4 million in state-based appropriations for childhood cancer research, and its goal is to expand the “What About Kids?” State Research initiative across the country, including Massachusetts. ACCO also distributes specialized resources to help children with cancer and their families understand this difficult journey and how to navigate it together.

Sponsorship packages for the benefit event are available starting at the GO GOLD® Friend level of $2,500, which includes five complimentary gala tickets, minor visual recognition on event and ACCO website, ACCO-sponsored emails and social media. The top-level sponsorship package is $40,000 and includes 3 complimentary gala tables (30 tickets), mention in gala press release, as well as onsite presence such as signage and display table, company branded items and premier visual recognition, among other benefits.

Tickets for the gala are $250 per person. All proceeds of the ticket sales as well as any donations and funds from the live auction will go directly towards expanding research for pediatric cancer. To purchase tickets or become a sponsor, visit https://accorg.regfox.com/go-gold-gala.

For more information, contact Ruth Hoffman, CEO of ACCO at rhoffman@acco.org or Liz Adams, Gala Manager at ladams@acco.org.

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About the American Childhood Cancer Organization
The American Childhood Cancer Organization (ACCO) was founded in 1970 by parents of children diagnosed with cancer. ACCO is the nation’s oldest and largest grassroots organization dedicated to childhood cancer. ACCO is determined to make childhood cancer a national health priority by shaping policy, expanding research, raising awareness, and providing educational resources and programs to children with cancer, childhood cancer survivors, and their families. For more information, visit acco.org.

Indiana and Kentucky Childhood Cancer Day: Making Strides for the Cure

Posted on February 20, 2023 by American Childhood Cancer Organization

Imagine hearing “your child has cancer,” and then learning that there is hardly any funding for life-saving research. That is the reality for childhood cancer patients and their families.

Indiana and Kentucky had very successful bi-partisan support at their respective Advocacy Days held on International Childhood Cancer Day on February 15th. More than 100 advocates from across those states went to their state capitols to support one another and bring awareness to the disease that kills the most children in the US.

Indiana’s first Advocacy Day at the Statehouse was focused on new legislation intended to provide a dedicated appropriation for childhood cancer research. Families shared their support of this funding opportunity to highlight the need for childhood cancer to be a state health priority. We will continue to lead Indiana’s legislative effort to fund childhood cancer research at the state level. 

Kentucky had a very successful day at their capitol with the updated state budget. It was great to be able to work with the Kentucky cancer registry and have bi-partisan support of legislators in Kentucky. This was a great opportunity to bring together the childhood cancer families as well as highlight research accomplished from the appropriations. We are excited to gather in May for the Kentucky Pediatric Cancer Conference to feature state level research and advocacy. Interested in attending? Click here for more information.

Interested in taking action in YOUR state? Click here or email Jessica Beckstrand at jbeckstrand@acco.org directly.

Gold Ribbon Hero: Samir

Posted on January 15, 2023 by American Childhood Cancer Organization

Meet Samir, an Acute Lymphoblastic Leukemia (ALL) warrior.

Samir’s journey started with round the clock fevers and little red dots on his face. He was taken to several different hospitals and all thought it was a virus. Several weeks passed and the family finally got the diagnosis on November 5, 2019.  Samir was diagnosed with ALL. “I never expected to have my son fight for his life. It was the most confusing and painful pain in our life” Norma, Samir’s mother, remembers. 

“Samir has been in chemotherapy since day one, with countless blood transfusions, spinal taps and side effects. He had a port placed in his chest and then had it replaced since it was not working properly.” According to his mother, Samir has the best spirit even when near death. Samir suffered many side effects like losing the ability to walk, infections, viruses, fevers and neutropenia. 

Norma said that “Samir has been the bravest boy and is loved by everyone. He enjoys playing nurse and loves caring for others.” 

Learn more about ALL here.

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

Gold Ribbon Hero: Hallie Jean

Posted on January 8, 2023 by American Childhood Cancer Organization

 

Meet Hallie Jean, a CNS embryonal tumor hero.

When Hallie was three weeks old she started vomiting uncontrollably and her mother, Erica took notice. While Hallie Jean was under GI tract observation, she threw up. The GI team asked Erica if doctor’s had ever looked at her brain. Thinking this was an odd question, Hallie’s parents allowed them to take a look. An ultrasound and MRI was performed on Hallie Jean’s brain which revealed a mass.

“From then on there were two speeds – lightening fast and torturously slow – as doctors determined the best course of action to help her,” Erica remembers. Hallie Jean’s first brain surgery was on January 13, 2021 where neurosurgeons were able to remove roughly ⅔ of her tumor. A shunt was placed just a week later and that evening Hallie Jean’s parents were given her diagnosis: CNS Embryonal Tumor (NOS). The outlook was poor.

“We were in shock. We had been hopeful that her tumor type would be something curable or be able to be treated with a target approach chemotherapy. Hearing how poor of an outlook this tumor type had made us feel hopeless and alone.”

Treatment plans were minimal due to Hallie Jean’s size and age, but her parents decided to take action and give her a chance. 19 days later, Hallie Jean was taken back to the hospital where doctors noticed her shunt was not working and likely clogged with cancer cells. The tumor had grown much larger and there was a bleed that had started in the center of her brain. Hallie Jean’s parents made the difficult decision to not put her through any more surgeries. Instead, she was brought home with the help of a local hospice group, surrounded by love. Ten days later, Hallie Jean passed away.

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

#childhoodcancer #childhoodcancerawareness

ACCO’s CEO, Ruth Hoffman Celebrates 52 Years of Childhood Cancer Advocacy

Posted on November 30, 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 ultimately saved her life. Total body radiation and chemotherapy were so toxic to her little body. I hoped that someday children would have gentler treatment options. It has been thirty-five years since her diagnosis, and in those thirty-five years, the treatment protocol for children diagnosed with AML has barely changed.

Cancer remains the number one cause of death by disease for children in the U.S, and unlike many adult cancers that have declined in incidence, childhood cancer incidence is increasing. Despite these alarming statistics, 29 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 am grateful to ACCO’s Board of Directors for their support over the past 23 years and proud of my staff’s continued commitment to changing these statistics. ACCO is actively participating in 34 state cancer plan working group coalitions, with the goal of including childhood cancer language and strategies in all 50 states. ACCO is also leading the way in securing state-level funding for childhood cancer research. Through our “What About Kids” Research Initiative, ACCO has secured $72.4 million since 2018 with more than $30 million appropriated in the last year! I’m happy to share that significant childhood cancer research is occurring because of the appropriations in KY, MD, NJ, and PA!

I’m also honored to share that in October, the World Health Organization (WHO), under the sponsorship of ACCO, launched its first-ever global survey to amplify the voices of pediatric and adult cancer survivors, caregivers, and bereaved families. By better understanding the psychosocial and financial tolls of cancer, we can more effectively support the people it impacts. This survey hopes to reach more than 100,000 responders from 100 countries.

If cancer has impacted you or a loved one, we want your story too. Please click here to take the survey.

As ACCO dedicates its 53rd year to providing hope to children with cancer and their families, I invite you to dedicate your commitment to ACCO through your end-of-year appeal. Your gift will further our vision towards shaping policy, securing appropriations for state-based childhood cancer research, raising awareness, and providing educational resources and innovative comfort programs to our nation’s children with cancer. Together, we can make a difference, so that other children with cancer don’t have to wait until the year 2057 to see change.

Secure donations can be made at acco.org/donate or mailed to ACCO, P.O. Box 498, Kensington, MD 20895-0498.

With Gratitude,

 

 

Ruth I Hoffman, MPH, CEO, ACCO

Thankful Thursday

Posted on November 16, 2022 by American Childhood Cancer Organization

 

 

 

 

 

 

 

 

ACCO is so thankful for our event hosts. In this season of giving thanks, we want to highlight just a few of our many generous supporters. This September, ACCO was honored with more than 130 events across the United States. We were delighted to see so many first-time hosts, as well as so many experienced event-runners who had worked with us in the past! 

Last year, we received a donation from Custom Ink on behalf of Rio, an osteosarcoma fighter. Rio’s friend Chloe hosted a shirt fundraiser in his honor. Rio’s friends, family and community purchased shirts and wore them to school on Rio’s treatment days and on any day he might need extra support. This year, Chloe continued the tradition and held another shirt fundraiser. To date, Chloe has raised a little over $3,400 for ACCO in honor of her friend. 

Every year, schools across the country partner with ACCO to raise awareness and funds for our nation’s littlest cancer patients. With each event, students are proving that they can impact their community when they work together. We are so incredibly proud of every school that participated in our programs this year. 

In Texas, Tom Wilson Elementary raised more than $3,400, mostly with small donations of less than $5. We were awestruck to see what an impact they made, and we are proud and thankful for the students and community at Tom Wilson Elementary. 

Brookside Place School has hosted PJammin® events with us before, and we were happy to welcome them back this year. They raised more than $3,700 in memory of their friend Will, a forever osteosarcoma hero.

Germantown, MD brings yet another amazing story of generosity. Sixth grader Vishagan Aranganathan had a special idea for how to celebrate his birthday: he asked friends and family to donate to a gofundme page, in support of children with cancer. He successfully raised $500! 

ACCO is honored and thankful for each of our hosts who work so hard to make their events successful. We look forward to expanding our program throughout the year. If you are interested in hosting a GO GOLD® or PJammin® event, please contact Blair at bscroggs@acco.org. We’d love to work with you!