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Gold Ribbon Hero: Adley

Gold Ribbon Hero: Adley

Meet Adley, a B-Cell Acute Lymphoblastic Leukemia warrior. 

Two weeks before Adley’s second birthday, Adley’s father noticed she was lethargic, pale and wanted to be constantly carried. Adley’s parents scheduled her two year appointment early so that they could get lab work done. The pediatrician called and advised Adley and her parents to make their way to Penn State Hershey Children’s Hospital where a room was waiting for them. 

“No parent should ever have to hear that your child has cancer. This day was by far the hardest of them all. The information, multiple doctors and worry was the worst,” remembers Chad, Adley’s father. 

Adley has undergone more than 10 spinal taps, two bone marrow biopsies and a port placement surgery. She continues to have spinal taps every three months until May 2024. 

Currently, Adley is on long term maintenance with an end of treatment date set for May 16, 2024. 

In 2023, Adley was selected to represent ACCO as an ambassador for the year and is found on ACCO’s GO GOLD® the RUN website. 

Learn more about ALL here.

 

ACCO’s CEO Receives Award by M & T Bank and iHeart Radio

In January, ACCO’s CEO, Ruth Hoffman, was nominated for M & T Bank’s “CEO You Should Know” Award and was selected in March! We are absolutely thrilled to share this with our community. Be sure to listen to any iHeart Radio station in the greater Washington D.C. area to hear the commercial and you can read more about her here.

What makes a good CEO? Is it dedication to the organization’s mission or the ability to inspire all who she employs? With that said, I humbly nominate Ruth I. Hoffman as the next CEO You should know. 

Ruth was thrust into the childhood cancer world when her 7-year-old daughter was diagnosed with acute myelogenous leukemia (AML). Since 1999, Ruth has been CEO of the American Childhood Cancer Organization (ACCO) and is the immediate Past-President of Childhood Cancer International. 

To say childhood cancer advocacy is a passion for Ruth is an understatement. She has spent more than thirty years raising awareness and advocating for cancer’s littlest patients.

“Ruth is focused on advancing childhood cancer initiatives around the world and leads a team of individuals dedicated to the mission so that one day there is a cure,” said Elizabeth Turner, Regional Advocacy Coordinator.

Even on the darkest days, ACCO’s resources help to bring smiles to the faces of cancer’s littlest patients. Ruth was hands on when it came to developing resources to help kids with cancer. She said, “I am proud of all of our comprehensive childhood cancer resources, born out of parents’ frustration with the lack of readily-available and easy-to-digest information. When parents write to let me know that their child related to our book “Marvelous Marleigh” or felt empowered to face cancer treatments after playing with ACCO’s Medical Play Kit, there is an inner peace that I feel knowing that I played a role in making a family’s journey a bit easier as a result of these important resources.” 

ACCO’s roots are deeply planted in the advocacy community and with the expansion of the “What About Kids?®” initiative, ACCO has proven that states play a critical role in overcoming the national disparity between adult and childhood cancer research, treatment and support. As of 2023, the “What About Kids?®” research Initiative has raised more than $72.4 million for childhood cancer research under Ruth’s leadership. 

“In order for someone to work as hard as Ruth does, while simultaneously and consistently radiating such warmth, that person needs to truly and wholly love what she does, who she does it with and what she does it for. She makes it look easy and when it all comes together, it’s downright inspiring,” said Samantha Clary, ACCO’s Resources Coordinator. 

Ruth’s dedication to childhood cancer doesn’t just include the United States. She has helped ACCO cross borders and address the needs of kids with cancer and their families worldwide. 

In the past six years, Ruth has helped develop a nutritional program in Addis Ababa, fund a nutrition program in Ethiopia, aid in getting supplies for Beirut children following the explosion and navigated support for kids with cancer and their families during the Ukrainian crisis. 

Most recently, Ruth worked with the World Health Organization (WHO) to develop a survey to amplify the voices of pediatric and adult cancer survivors, caregivers and bereaved families. This survey aims to reach more than 100,000 responders who have been affected by cancer in some way.  

Ruth’s unfailing love of what she does radiates throughout the organization and her dedication to the cause is awe inspiring. 

Gold Ribbon Hero: Jovaniel

Meet Jovaniel, a T Cell Lymphoblastic Lymphoma warrior.

“No parent should ever hear the words, ‘your child has cancer’” said Marjorie, after recalling the day her 3 year old was diagnosed with cancer. Jovaniel was an active and happy little boy until a chest x-ray revealed a tumor on his chest compressing his trachea. Once the diagnosis was revealed, he had a biopsy, port placement and started chemotherapy. 

According to his mother, he is currently on treatment and doing well. 

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

Gold Ribbon Hero: Liam

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

 

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

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

 

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

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

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

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!®”