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Gold Ribbon Hero: Samir

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!®”

Gold Ribbon Hero: Hallie Jean

 

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

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

 

 

 

 

 

 

 

 

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! 

American Childhood Cancer Organization (ACCO) is Now Working with CardFunder to Expand Fundraising Efforts

The American Childhood Cancer Organization is working to bring more accessible ways to fundraise to our community and has recently started working with CardFunder, a new fundraising platform. CardFunder, allows nonprofits to turn unwanted gift cards into fundraising dollars. Recently, CardFunder launched its online giving platform and Mobile App, which makes fundraising even easier—and donating even more convenient. Donors can give new or partially used gift cards directly through the American Childhood Cancer Organization online campaign page or via Mobile APP powered by CardFunder. 

This free tool allows donors to contribute from anywhere in the U.S., making it a game-changer for nonprofit fundraising. “We’re always looking for a new and innovative way to fundraise for our community,” said Blair Scroggs, Public Relations Coordinator at ACCO. Organizations can easily hold a virtual or hybrid fundraiser that solicits gift card donations from supporters across the nation. 

“We are honored to support ACCO’s mission to be the voice of childhood and adolescent cancer,” said Russ Howard, CEO at CardFunder”. By giving nonprofits an innovative new avenue for fundraising, CardFunder allows them to tap into the billions of unused gift card dollars. Americans have $21 billion in unused gift card funds, averaging $175 per person. Much of that amount will go to waste unless we pursue innovative ways of tapping into those funds. Many people forget to spend their gift card money or didn’t want it to begin with.

Why let these unwanted funds go to waste? With the help of CardFunder, ACCO can set up a fundraiser in minutes. Then, they share their link on their social networks, posting it on Instagram, Facebook, and Twitter. They also receive a QR code to and URL-sharing link. Donors scan their gift cards and enter the numbers, following a few simple prompts. 

“We’re really excited to see where this collaboration will take us,” said Scroggs. 

Interested in getting involved with ACCO and Cardfunder? Click here

 

About ACCO

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

 

About CardFunder

CardFunder powers fundraising efforts by enabling organizations to accept unwanted gift cards and monetizing the cards into cash donations. Serving schools, churches, nonprofits, and other groups, CardFunder provides all the tools needed to easily run a gift card campaign. Through these efforts, CardFunder helps local groups and large nonprofits tap into the more than $20B in unspent gift cards.

 

Contact Info

CardFunder:

Russ Howard

Founder / CEO

russ@cardfunder.com

 

ACCO:

Blair L. Scroggs

Public Relations Coordinator

bscroggs@acco.org

WHO launches new campaign to amplify the lived experience of people affected by cancer

18 October 2022 – Today, WHO is launching the first global survey to better understand and address the needs of all those affected by cancer. The survey is part of a broader campaign, designed with and intended to amplify the voices of those affected by cancer – survivors, caregivers and the bereaved – as part of WHO’s Framework for Meaningful Engagement of People Living with Noncommunicable diseases (PLWNCDs). This Framework is a commitment to respectfully and meaningfully engage PLWNCDs in co-designing policies, programs, and solutions. The survey results will feed into the design of policies and programs to offer better well-being in the context of a cancer diagnosis and co-create solutions for the future.

Nearly every family globally is affected by cancer, either directly – 1 in 5 people are diagnosed with cancer during their lifetime – or as caregivers or family-members. A cancer diagnosis triggers a broad and profound effect on the health and well-being of all those involved. “For too long, the focus in cancer control has been on clinical care and not on the broader needs of people affected by cancer,” said Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization. “Global cancer policies must be shaped by more than data and scientific research, to include the voices and insight of people impacted by the disease.”

Recent studies have shown that nearly half of people diagnosed with cancer experience anxiety and loss of faith and may be abandoned by their intimate partners. In low- and middle-income countries, financial hardship and loss of assets can be experienced by 70% or more of those affected. “When my daughter was diagnosed with cancer, our lives changed drastically and in ways that we did not expect. The effects of cancer last a lifetime,” said Ruth Hoffman, President of the American Childhood Cancer Organization.

Understanding and amplifying the lived experiences of people affected by cancer can create more effective and supportive systems. Yet, the needs and preferences of people with cancer and their caregivers remain unknown to many providers and policy-makers. “We are making a long-term commitment to place people affected by cancer properly at the center of the agenda, to co-create better solutions” explained Dr Bente Mikkelsen, Director of the Department of Noncommunicable Diseases at WHO. “This campaign will include four phases: releasing the global survey, hosting national consultations, presenting best practices and implementing community-led initiatives. We are ready to open a new chapter and improve the well-being of people affected by cancer.”

The ambition of the global survey is to reach more than 100 000 responders from 100 countries, a majority of whom live in low- and middle-income countries. The survey results are expected in early 2023 and, thereafter, used to shape policies, programs and services for people affected by cancer globally.

Take the global survey here.  

Learn more

ACCO is Grateful to Our Regional Advocacy Ambassadors, Amy & Hannah

Advocacy is at the heart of ACCO’s mission and ACCO’s Regional Advocacy Ambassador’s, Amy and Hannah embrace that fully. Thank you for using your talents to make a difference. We are pleased to recognize you and grateful to have you on our What About Kids team!

Meet Regional Advocacy Ambassador, Amy

Since 2017, we are proud and honored to have worked with state legislatures across the country to secure $66 million dollars in funding with the goal of overcoming the national disparity between adult and childhood cancer research. Many times this effort begins with state cancer action plans. Currently only 11 states include substantive language specific to childhood cancer. We believe each state should have specific objectives related to childhood cancer! It takes a team to make meaningful policy change and we are so thankful to have such talented individuals committed to this cause.

One of those is Amy Kindstedt, a ACCO Regional Advocacy Ambassador. As a high school sophomore and two-time childhood cancer survivor, Amy works tirelessly to conduct outreach to new volunteers, reach out to legislators and partners, gather data about any existing childhood cancer work, and create systems to organize data so we can efficiently move forward. Recently, Amy reached out to all 50 states to develop partnerships and share information to create change for this important initiative.


Meet Regional Advocacy Ambassador, Hannah

At the American Childhood Cancer Organization we are proud that ALL of our advocacy team are childhood cancer survivors or parents of children diagnosed with cancer. We know that those directly impacted are the most powerful advocates as we share personal stories with elected officials and key leaders. We invite you to meet Hannah Adams, a 12 year survivor of Stage 3 Nephroblastoma. 

Hannah Adams, of Alabama, is a critical member of this team serving as a Regional Advocacy Ambassador. After enduring surgery, radiation, and chemo she is on fire for the cause to help other children, adolescents and young adults impacted by this horrible disease. In this role Hannah has provided key assistance in state-level advocacy for childhood cancer research appropriations as well as inclusion of specific childhood cancer content in state cancer action plans communicating with all 50 states. Hannah’s leadership in grassroots advocacy has resulted in impactful progress in California, Alabama, Florida, South Carolina, Arkansas and Tennessee – and she is just getting started! 

CEO of ACCO Ruth Hoffman Shares Her “Why”

 

 

 

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 would ultimately save her life. Total body radiation and chemotherapy were so toxic. I believed that within twenty years, innovative research would result in new treatments – treatments that wouldn’t be so toxic to children with cancer. It’s been thirty-five years since her diagnosis and treatment and sadly, there has been little change in the treatment protocol for children diagnosed with AML. 

Cancer remains the number one cause of death by disease for children in the U.S. Unlike many adult cancers that have declined in incidence, childhood cancer incidence is increasing. Despite these alarming statistics, 30 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 have remained committed to this cause for the last 35 years and why I am proud of my team at ACCO. Together, we have worked hard to change this landscape. I hired Jamie Bloyd, a former legislative agent to launch ACCO’s “What About Kids” Research Initiative in KY which resulted in the first specific childhood cancer research appropriation in 2018. Since then, ACCO has continued to build its team who works closely with state governments to reduce the disparity between adult and pediatric cancer. 

To date, $66 million has been appropriated for childhood cancer in four states because of ACCO’s “What About Kids” State Research Initiative, with more than $30 million appropriated in the last year!

  • In 2022, through the work of ACCO’s Director of Government Affairs and our KY-based Advocacy Regional Coordinator, Kentucky’s General Assembly increased its state appropriation from $2.5 million annually to $6.25 million for FY 2023-24 bringing the total appropriation for childhood cancer in Kentucky to $22,500,000 from FY 2018 – FY 2024.
  • In 2022, ACCO’s continued advocacy with New Jersey’s governor resulted in an additional $10 million appropriated for childhood cancer research, bringing NJ to a total of $25,000,000 appropriated to date. 
  • In 2022, ACCO’s advocacy with PA resulted in an additional $7.5 million appropriated for childhood cancer research at 3 academic research institutions, bringing PA to a total of $17.5 million appropriated to date. 
  • ACCO identified legislative champions in Maryland and California. We worked to have childhood cancer legislation passed in Maryland (SB 51, and HB 775), with an associated $1 million appropriated by Governor Hogan for childhood cancer research at the University of Maryland’s School of Medicine.
  • ACCO staff also serve on numerous State Comprehensive Cancer Plan Working Groups to increase the number of states that include childhood cancer language and strategies in their cancer plans.
To date, $66 million has been appropriated for childhood cancer in four states because of ACCO’s “What About Kids” State Research Initiative. Donate to ACCO to Further this Mission.

What About Kids Research Projects

I’m also happy to share that significant research has already taken place because of the state-based childhood cancer appropriations in KY, MD, NJ, and PA!  

  • Evidence-based childhood cancer research which is funded through the Kentucky Pediatric Cancer Research Trust Fund includes research focused on childhood acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), brain and spinal cord tumors, Ewing Sarcoma, Osteosarcoma, and Germline research, all taking place at the University of Kentucky. The University of Louisville is doing novel research focused on AML, CAR-T therapy, neuroblastoma, as well as the psychosocial impact roadmap of childhood cancer. 
  • Maryland’s appropriation research plan is summarized in Maryland’s Cancer Moonshot in Pediatric Cancer Research. Like Kentucky, research will be focusing on types of childhood cancer with poorer prognosis including AML, and brain tumors. Their studies will be focused on structure-based drugs which degrade proteins that drive childhood leukemias, structure-based drugs which attack a novel, high-potential target molecule in pediatric cancers, biomaterials for controlled delivery of therapeutics for childhood leukemias and brain tumors, as well as ways to cross the blood-brain barrier to utilizing immunotherapy to treat pediatric brain tumors. There is such a need for new drug development for childhood cancer.
  • Childhood Cancer Research is also taking place at Children’s Hospital of Philadelphia, UPMC Children’s Hospital of Pittsburgh, Penn State Children’s Hospital, and Abramson at UPENN, as well as Rutgers Cancer Institute of New Jersey.

Are you looking for a way to donate to childhood cancer research? I’m personally asking that you please consider supporting ACCO’s What About Kids Research Initiative as we expand innovative state funding for childhood cancer research. 

Together, we have shown that we can make a difference in providing hope to children with cancer and their families, through innovative state-based funding for childhood cancer research.

Warmly,

 

Ruth I Hoffman, BA, BEd, MPH

CEO, American Childhood Cancer Organization

DONATE TODAY!

 

THE WHITE HOUSE DECLARES SEPTEMBER AS CHILDHOOD CANCER AWARENESS MONTH IN 2022

During National Childhood Cancer Awareness Month, we remember the bright lives of children we have lost to this terrible disease.  We recommit ourselves to finding new therapies to treat and defeat pediatric cancer.  And we pledge to help children not only survive cancer but thrive.
Cancer remains the leading cause of death by disease for American children under the age of 15, and survivors often face physical, emotional, and cognitive challenges.  Jill and I know from personal experience how a cancer diagnosis can be paralyzing.  Worry and heartache cast a shadow on life’s joys, medical bills mount, and treatment paths are often confusing and difficult to absorb.
My Administration is committed to ending cancer as we know it.  The First Lady and I reignited the 2016 Cancer Moonshot Initiative, and we have set a goal of cutting the cancer death rate by at least half over the next 25 years.  I formed a new Cancer Cabinet to ensure that Federal agencies are coordinating cancer care programs, research, and development.  And this year, my Administration created the first Advanced Research Projects Agency for Health (ARPA-H) with the single purpose of expediting breakthroughs in the prevention, detection, and treatment of deadly diseases.  This is one of the pillars of the Unity Agenda I announced in my State of the Union Address.
Although significant progress has been made, many parents still have to advocate for their children’s basic care when insurance companies refuse to pay.  My Administration is committed to strengthening the Affordable Care Act and Medicaid to help ensure access to preventive care screenings and life-saving treatments.  Thanks to the American Rescue Plan’s provisions that build upon the Affordable Care Act and other actions my Administration has taken, 1 million children have gained health care coverage since I became President, helping to reverse the coverage losses during the previous Administration. And, as part of the Inflation Reduction Act, 13 million Americans will continue to save $800 per year on health insurance premiums — making lifesaving care affordable for millions of American families.  My Administration is also committed to helping families navigate the flood of information that comes with a cancer diagnosis.  For anyone experiencing uncertainty around risk factors, treatment options, or other opportunities for support, you can connect with a trained specialist at 1-800-4-CANCER or visit cancer.gov.
During this National Childhood Cancer Awareness Month, we recognize the health care professionals, researchers, private philanthropies, social support organizations, and patient advocacy groups who work tirelessly to protect our children’s well-being.  We honor the courage of our children fighting pediatric cancers and the strength of their families and caregivers who never stop loving, supporting, and advocating for them.  We rededicate ourselves to ensuring that every child can enjoy a long, healthy, and fulfilling life.
NOW, THEREFORE, I, JOSEPH R. BIDEN JR., President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2022 as National Childhood Cancer Awareness Month.  I encourage citizens, government agencies, private businesses, nonprofit organizations, the media, and other interested groups to increase awareness of what Americans can do to support the fight against childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of August, in the year of our Lord two thousand twenty-two, and of the Independence of the United States of America the two hundred and forty-seventh.

                             JOSEPH R. BIDEN JR.


Gold Ribbon Hero: Iyra

 

Have you been curious about the little warrior shown in our giving season images? Meet Iyra, a brave 4-year-old rhabdomyosarcoma warrior. 

In August, Iyra was featured in our GO GOLD® the Run campaign and her story ran on our blog and social media and we wanted to share some updates on Iyra’s journey. 

In September 2022, Iyra completed her frontline treatment and is “thriving like a little girl must,” according to her mother, Divya. Since treatment ended, she has had one scan which has come back clean. Her family looks forward to getting her port removed next year. 

This giving season, donate to ACCO, because kids like Iyra can’t fight cancer alone! 


Meet Iyra, a 4 year old rhabdomyosarcoma warrior.

In November 2021, Iyra’s mother noticed blood in her urine. Iyra was taken to the pediatrician who suspected a urinary tract infection. They asked to keep an eye on it and if they didn’t subside to bring her back in. Just before Thanksgiving, Iyra was taken to the emergency room where she had an ultrasound and CT scan performed. Iyra’s parents, Divya and Rupesh were told that a cyst formation was found on her left kidney which could be cancerous. “After hearing ‘cancerous’ we were completely shocked.” Iyra was transferred to another facility for further testing.

Initially, doctors thought Iyra had a Wilms tumor and recommended a kidney removal. After further testing on the tumor, doctors discovered that Iyra had stage 3 rhabdomyosarcoma.

Currently, Iyra is undergoing chemotherapy at Johns Hopkins. She will undergo 14 21-day cycles of chemotherapy along with six weeks of radiation therapy. “She has a long road ahead of her and our lives have changed radically since her diagnosis. My husband and I feel completely devastated. Regardless of all this, Iyra is a fun child who loves to play with her sister. She is a very caring and strong girl. She reminds us that no matter how hard things get, we must learn to smile and keep a positive attitude.”

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

Learn more about rhabdomyosarcoma here.

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