Meet Mady, a courageous 13-year-old dancer with a love of fashion and makeup. ACCO first got in touch with Mady’s mom, Ashley in February of 2019 after Mady got to meet Randy Fenoli at Kleinfeld in New York City. We’ve been following Mady’s story ever since.
This month Mady relapsed and this time it was evident in her spine. She is beginning cycles of radiation in early February in New York.
Mady was first diagnosed with neuroblastoma at the age of 8 years old. According to Ashley, “Mady was playing softball and rounded a base. She hurt her ankle which caused pain throughout her body. I knew something was wrong but didn’t know the extent.”
“It was the scariest day of our lives. The doctor sat us down and said her gut feeling was right – they had found a tumor on Mady’s left adrenal gland.” The doctor ended up doing more scans and discovered neuroblastoma. Mady was scared and confused and of course, Ashley was terrified of the outcome.
Treatment started shortly after with several rounds of chemo and radiation which made Mady extremely sick. She was devastated when she lost her hair but she kept fighting. Later, it was discovered that Mady’s body was resistant to the chemo so they quickly switched to two different immunotherapy treatment and two mibg radiation therapy treatments. Mady has had two ports placed, had her left adrenal gland removed and endured biopsies of skull lesions.
After two years of treatment, the cancer went dormant but relapsed in January of 2018. In March of 2018, Mady and her mom traveled to New York twice monthly to begin a trial treatment which cleared her of disease after 13 rounds of immunotherapy. In August of 2019, she had her first set of clear bone scans in almost four years.
Mady’s attitude has been determined throughout treatment saying “it’s okay, I’m going to beat it!” From day one she had faith that she was going to beat the disease and has persevered when nothing was working. You can follow Mady’s story here: https://www.facebook.com/groups/1038894766152004/
Please help ACCO send well wishes to Mady and her family by commenting on this post!
ACCO provides information, resources, support, awareness and advocacy to families who are affected by childhood cancer. Donate today to help the littlest warriors.
Meet Adrian, a shark and travel enthusiast that was diagnosed with Pituitary Germinoma at the age of 16.
Adrian’s symptoms started in August 2017 when he was complaining of frequent headaches accompanied by nausea and vomiting. In October 2017, an MRI was taken of his brain revealing a mass in his pituitary region which compressed his left optic nerve.
On November 10, 2017, Adrian underwent his first brain surgery to remove the top portion of his tumor however the rest of the mass was not able to be removed. The top portion of the tumor was sent to the lab revealing Intracranial Pituitary Germinoma. Just 12 days later, Adrian was sent back into brain surgery to remove built up fluid on his brain.
Adrian’s mom, Veronica said “we were already devastated seeing him come out of a brain surgery. We were so nervous, but once we heard it was actually cancer, I cannot put it into words the devastation, fear, anger and a million feelings/thoughts/emotions we experienced. As a parent, it is the most devastating thing to hear that your child has cancer.”
Adrian began his first round of chemotherapy leaving him very weak. Three weeks later, he started his second round of therapy. In total, Adrian completed four rounds of chemotherapy and followed with 21 days of radiation.
Through all of the treatments, Adrian did not complain about his pain or struggles. Cancer gave Adrian a new outlook on life and his hope is that all affected with cancer around the world are cured of cancer and can live fulfilling and happy lives.
Adrian was awarded two separate trips which ultimately brought the family closer together in their journey. On his wish trip, Adrian was able to go shark diving, cave diving, and swim with the dolphins. “It allowed us to live in the moment with one another, something that we hadn’t really done because we would always anticipate every appointment, every chemo cycle, every surgery. It was something we were always anticipating, whether it was his health, we were always worrying. It just gave us just that hope to look forward to the future and not think about those things,” explained Veronica.
Adrian is now 18, and thriving as a survivor. He is currently being monitored by oncology every three months and is on hormone replacement therapy for his pituitary gland. Please join us in sending well wishes to Adrian and his family!
Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.
Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.
Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.” The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.
Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.
Grace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.
According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”
Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys talking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!
*Special thanks to Barbara Zobian and the Candlelighters NYC*
FOR IMMEDIATE RELEASE – September 28, 2018 – Washington, D.C. – The American Childhood Cancer Organization (ACCO), the soleU.S. member of Childhood Cancer International (CCI) provided its overwhelming support today for the World Health Organization’s (WHO) announcement of its new global initiative to address the disparity between childhood cancer survival in low-middle versus high-income countries. The announcement came at the United Nations (UN) General Assembly’s side-meeting on childhood cancer which was organized by the Missions of the Republic of Uzbekistan, the Hashemite Kingdom of Jordan, El Salvador, the Republic of Moldova, the Kingdom of Morocco, the Republic of Philippines and the Russian Federation.
Funded through a generous donation from St. Jude Children’s Research Hospital, the WHO Global Initiative for Childhood Cancer partners with national and international *stakeholders including CCI to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programs.
Each year, more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Approximately 8 in 10 of these children live in low and middle-income countries where their survival rate is often near 20%. This is in stark contrast to high-income countries, where cure rates exceed 80% for many common childhood cancers.
How urgent is this global initiative? “Childhood cancer is the number one non-communicable disease (NCD) cause of death in children globally,” said Ruth Hoffman, ACCO’s Chief Executive Officer, and President of Childhood Cancer International. “Childhood cancer has no borders. Why should childhood cancer treatments and cures? Even in the U.S. the majority of children with cancer continue to be treated with old drugs that were developed in the 1950’s, ‘60’s and 70’s. These drugs cost very little yet are too often unavailable to the majority of children with cancer in the world who happen to live in low to middle income countries. With increased access to essential childhood cancer medicines and radiation, children can be cured of their disease regardless of where they live in the world.” Ms. Hoffman will continue to represent the voice of the families of children with cancer as a member of the WHO Global Initiative for Childhood Cancer.
Increase political commitment and capacity of countries to deliver best practices in childhood cancer diagnosis and treatment;
Support governments to develop high-quality cancer centers as well as develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship
care inclusive of the needs of childhood cancers;
Improve access to affordable essential child cancer medicines and technologies;
Support governments to safeguard families of children with cancer from social isolation and financial ruin as a result of cancer care;
Prioritize cancer as a child health priority and increase available funding at the national and global levels.
This initiative is founded on the World Health Assembly’s resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.
Actions to increase childhood cancer survival today represent effective and tangible steps as part of the broader fight against non-communicable diseases – steps that will catalyze global efforts to transform childhood cancer outcomes worldwide and ultimately save many more lives of children, now and for years to come.
*Some Stakeholders include: The International Society of Pediatric Oncology (SIOP), Intenational society of pediatric oncologists, Union for International Cancer Control (UICC), International Atomic Energy Agency (IAEA), International Agency for Research on Cancer (IARC), Sick Kids Hospital of Toronto, Texas Children’s Hospital, World Bank, Pediatric Oncology Rally to Transform Access to Global Essentials (PORTAGE), Friends of Cancer Patients (FOCP), Chai Clinton Health Access Initiative (CCHAI), BIO Ventures for Global Health (BVGH), Pharmaceutical Industry, International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)
The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The U.S. largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States. www.acco.org.
Childhood Cancer International (CCI) was founded in 1994 and is recognized as the largest patient support organization for childhood cancer in the world. Comprised of 188 member organizations in 98 countries, CCI represents the voice of children and adolescents with cancer, childhood cancer survivors and their families globally. Operating as a non-State Actor in official relations with the World Health Organization (WHO), CCI engages with the WHO as well as international develo
pment organizations, policy-makers, civil society organizations, research and medical professionals to advocate for the rights of children and adolescents with cancer and prioritize childhood cancer as an integral part of the local, national and global child health and development agenda.www.childhoodcancerinternational.org
FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization and President, Childhood Cancer International. email@example.com; 202-262-9949.
Today marks the beginning of Childhood Cancer Awareness Month, September 2016
Each September we hope to raise much needed awareness for childhood cancer and we can’t do that without your help. To start, please take a moment to share this page on your social media profile, in an email or however you would like with your community by copying and pasting this website address https://www.acco.org/blog/childhood-cancer-awareness-month-2016/. Then, learn about the many ways that you, your family and friends, and your community can help:
The Gold Ribbon: The international awareness symbol for Childhood Cancer is the gold ribbon. Wear or display a gold ribbon for everyone to see this month. Put a gold ribbon car magnet on your car, share gold ribbon stickers, wear a gold ribbon pins or make your own gold ribbon Add a gold ribbon to your social media images and add a gold ribbon emoticon to your posts and status updates. Provide gold ribbons for your child’s school, for your fellow employees at your place of work and/or for your church or other group. Click Here to learn more about the Gold Ribbon.
Go Gold®: Change you profile, cover and header images on your social media to gold or gold themed images. Ask everyone you know to show their support by changing their images to gold themed images. You can also wear gold, host a “Go Gold®” event or think of any creative way to share gold this September. Although many colors were considered, gold was agreed upon as the ideal choice for childhood cancer awareness because gold is a precious metal, and is therefore the perfect color to reflect the most precious thing in our lives—our children. Click Here to learn more about Childhood Cancer Awareness Month. (“GO GOLD®” and “GO GOLD for Kids with Cancer®” are registered trademarks of ACCO. ACCO registered the marks to protect the identity of the gold ribbon and GO GOLD expression and its derivations to the childhood cancer cause.)
Wearing Awareness Items: Wearing awareness items such as our awareness shirts, gold ribbons, “Go Gold®” bracelets, gold pins or other awareness items items. Our awareness shirts and items support ACCO’s programs and help us to provide free resources to families facing a childhood cancer diagnosis. Many of our shirts feature thousands of names that each represent a precious life and an entire community of people whose lives have been forever changed by childhood cancer. Click Hereto see our 2016 Go Gold Awareness shirts (only available until September 12th) or Here for other awareness items.
Host an Event:ACCO offers many ways for individuals, corporations, schools and any other groups to host ACCO signature events to help support children and teens with cancer. We help organize your event, provide prizes and event materials, a website portal for groups, team and/or individuals to collect donations, and depending on the size of your event, provide marketing options. Click Here to learn how to get involved.
Supporting the STAR Act:What could be a better way to kick off September as Childhood Cancer Awareness Month than adding your support to the most comprehensive childhood cancer bill ever in US legislative history: the STAR Act! We need your help reminding Chairman Upton that this bill is important and that it deserves a hearing! Click Here to learn more about how you can help.
There are so many wonderful and creative ways to help raise awareness about Childhood Cancer, and we are honored to help you however we can. If you would like to learn more or discuss your ideas about raising awareness this month, please feel free to Contact Us Here. We can’t wait to help you Go Gold® for kids with cancer this September! Please take a moment to view all of the many options on our website.
About the American Childhood Cancer Organization
The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.
The American Childhood Cancer Organization (ACCO) stands proudly at the forefront of the fight against childhood cancer, continuing our efforts to bring comfort and support to children with cancer and their families throughout their journey.
Our library of free learning resources is growing! Thanks to our donors, this past year, we delivered more than 45,000 individual items free of charge across the US! We are especially excited about the introduction of ACCO’s Medical Play Therapy Kit-a learning tool designed to familiarize children with the medical devices used during their cancer treatments.
In the words of one parent, “My little Gabriel received his medical play kit yesterday! He loves it! What a brilliant idea to give our cancer kids back a sense of control, when there is so much they can’t control through treatment.” Another parent wrote to say, “For a patient like Liam, one of his biggest obstacles has always been overcoming the fear of his port being accessed. Thanks to your play kit Liam is finding fun and new ways of exploring the entire process of port activation. Thank you ACCO for our play kit.” We could ask for no better evidence of the importance of our organization than these powerful testimonials.
Awareness is building across the nation, and the world! The world sparkled with gold lights illuminating countless buildings during Childhood Cancer Awareness Month. Our 2015 Go Gold for Kids with Cancer® t-shirt campaigns raised more awareness than we could have ever imagined, with more than 12,012 shirts, honoring the names of 4,892 children who have suffered from childhood cancer, proudly bringing awareness of childhood cancer right into the heart of your local communities. Our new website gives families even easier access to our amazing wealth of learning resources, insightful blogs, and online support community, and through social media we connect more than 78,000 individual family members, survivors, and supporters with our ever-expanding ACCO family.
Our voice is spreading! In the US, ACCO participated in the writing of the Childhood Cancer STAR Act (Survivorship, Treatment Access & Research), which brings hope to tens of thousands of children on active treatment and to the hundreds of thousands of survivors through increased government appropriations. And our efforts do not end at our borders. Cancer remains the leading non-communicable disease-related cause of death of children in the world, primarily due to lack of access to quality healthcare and effective treatment options. I was proud to have served on the planning committee of the 68th World Health Assembly’s first side-event on childhood cancer, along with board member Dr. Greg Aune as invited speaker. ACCO will continue to represent the U.S. in global childhood cancer advocacy initiatives, including the WHO’s committee working towards a 2017 childhood cancer resolution. Our goal is to reduce global childhood cancer mortality 30% by 2030.
The ACCO is growing, thanks to you! To accommodate this growth, we will be looking for a larger space to allow us to more efficiently house and ship our resources across the country. Our mission won’t end until these learning resources and support are no longer needed. Only through the generosity of individuals like you, can we continue to impact the lives of cancer’s littlest patients. Thank you for your consideration to help raise awareness about childhood cancer and to help ACCO provide national and international advocacy, support, and essential learning resources to children and their families.
Please consider a DONATION during this holiday season to further ACCO’s work towards reducing the burden of childhood cancer!
Because Kids Can’t Fight Cancer Alone®…our goal is to ensure that they don’t have to.
The ACCO is very excited to highlight our special partnership with TriDerma®, an industry leader in high-quality medical skincare products. TriDerma® has generously committed to supporting the ACCO’s ongoing mission to improve the lives of children undergoing treatment for childhood cancer and to bring ever-greater awareness to the courage and bravery of cancer’s youngest warriors. We are very pleased to have the opportunity to work with TriDerma®, and hope that together, we can bring comfort and relief to the many childhood cancer warriors undergoing treatment today.
During August, September, and October, TriDerma® is donating 20% of their proceeds from the sale of five specialty products to the ACCO! These products have been selected for a very specific reason: although they speed healing for many common skin concerns, they are also ideally suited to relieve some of the pain and discomfort caused the harsh, toxic chemotherapy and radiation protocols required to treat childhood cancer. These products are carefully formulated with the highest-quality, hand-selected ingredients and designed to stimulate faster healing without irritation or harmful side effects.
• Baby Feet® Ultimate Foot Cream • Everyday Bruise Relief™ • Post Laser Aloe & Zinc Occlusive™ • Radiation Skin Relief™ Fast Healing Cream • Scar Block® for Kids
20% of the proceeds of your purchase of these products in September and October will go directly to the ACCO, enabling us to continue to provide ongoing education and resources for children and their families facing childhood cancer. These TriDerma products are available for sale in major drugstores across the United States and through www.triderma.com.
TriDerma® and the ACCO are celebrating the courage of childhood cancer warriors around the country! If you know an exceptional child fighting cancer, we are asking you to share that child’s story and how the ACCO has helped you navigate your difficult journey. Every week, TriDerma® will randomly select one child to highlight on its social media pages and to receive one free TriDerma® product of their choice. At the end of each month, TriDerma® will randomly select a winner of a TriDerma® gift basket! The ACCO is very excited to work with TriDerma to share these beautiful, touching stories of children who refuse to give up, who refuse to let cancer win! We wish we could share all the incredible stories we have received thus far; here are just a few to demonstrate the power and courage of these children.
Jessen was diagnosed with stage 4 high-risk neuroblastoma in March 2013. During six rounds of chemo, five surgeries, a stem cell transplant, radiation, and antibody treatments, he developed a bowel obstruction caused by internal scarring. Jessen’s treatments ended in May 2014 and he lives a happy, active life, but has been left with severe scarring.
Mya was born with a malignant germ cell tumor, and underwent surgery followed by chemotherapy at just three months old. Her last treatment finished on August 24 and doctors feel confident that she is now cancer free!
Nate was diagnosed in 2006 with ALL at three years old. After three and a half years of chemotherapy, Nate went into remission. Now 12, he is doing well, but must have IVIG every four weeks to boost his immune system, which was permanently destroyed by the chemotherapy.
Noah was born with down syndrome and in January of this year, was diagnosed with ALL at the age of 4. He has reached the maintenance phase of his treatment, and is very happy to be home with his family!
Jabin was diagnosed with a rare brain tumor known as pineoblastoma in June 2006. After brain surgery, intensive radiation, four months of high dose chemotherapy, and a second brain surgery, Jabin’s prognosis seemed good. Unfortunately, he then developed a second tumor in his brain and two in his spinal fluid. He went to heaven in August 2007, and remains a hero to all who knew and loved him.
Special congratulations to Mandy J., winner of the month of August! Mandy’s daughter Lila was diagnosed with AML on her two-month birthday and remains in the hospital undergoing chemotherapy. Now four months old, she faces more chemotherapy and a potential bone marrow transplant. Our thoughts are with Mandy and Lila as they continue to stay strong through this difficult struggle.
If you have a story of an amazing child to share, look for our weekly #ShareYourStory post during September and October, and be sure to LIKE, SHARE, and COMMENT with your special story and how the ACCO has helped you and your family stay strong in the fight against childhood cancer. Help us thank the wonderful people at TriDerma® for their amazing contribution to the ACCO and to the entire childhood cancer community!