Cure Childhood Cancer

CURE Blog


September 4th, 2015

CURE Childhood Cancer Honors Alex

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Alex. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Alex’s fundraising page. 

Alex Shabman Photo

Alex was just 4 years old when he was diagnosed with stage 4 neuroblastoma in October of 2012. He had been complaining of leg pain for about a month prior to diagnosis. By the time doctors figured out what was causing the pain, cancer had spread throughout his entire body. Nearly 100% of his bone marrow was affected and he had bony lesions throughout his precious body. He also had a tumor in his abdomen that completely covered his right side. It was wrapped around his aorta and pressing against several major organs. His treatment began immediately at Children’s Healthcare of Atlanta.

The moment you hear that your child has cancer, life as you know it is gone. We were thrust into this world we knew nothing about. We had never even heard the word neuroblastoma before Alex was diagnosed. The doctors were giving us so much information so quickly, but it was hard to process much more than the word “cancer.”

Within 24 hours of diagnosis, we were introduced to CURE. We received a tote from CURE that was filled with various items for our hospital stay along with information that would help us during our journey.

After that initial introduction, their volunteers were always a welcome sight during our long and difficult days both in the clinic and at the hospital. They provided us with weekly lunches and dinners during our visits. They provide the kids with fun activities and gifts to help them forget about what they are going through for a little while. They provided us with smiles when we needed them the most.

In the nearly three years since diagnosis, Alex has faced his treatment (chemotherapy, surgery, stem cell transplant, radiation, and antibody therapy) like a total warrior. He is now part of a trial, which will hopefully keep him from relapsing. The relapse rate for neuroblastoma is terrifyingly high and the survival rate for relapsed neuroblastoma is even more terrifying. We are extremely fortunate to have Alex here and doing as well as he is. We also understand that Alex will be dealing with the side effects from his treatment for the rest of his life. For now though, he is N.E.D. (No Evidence of Disease), and he is a typical, happy 7-year-old boy who loves to swim, play games, and experience childhood with his sisters and friends.

Hopefully, we will be fortunate enough to never experience a relapse, but our lives since Alex’s diagnosis will never be the same. We can’t un-see what we have seen and we can’t un-know all we have learned throughout our journey. No child should have to endure what these children do. No parents should have to say goodbye to their baby. We have to help!

The most alarming thing we have learned is that funding for research in childhood cancer is abysmally low. Organizations like CURE are trying to change that. Even with all they do for families, hospital staff, and patients during treatment, CURE still manages to donate millions of dollars each year to go toward groundbreaking pediatric cancer research.

Please consider donating to CURE in honor of Alex and all of the other warriors and angels who have been affected by cancer. They deserve the necessary research that will help find a cure.

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September 4th, 2015

CURE Childhood Cancer Honors Gideon

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Gideon. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Gideon’s fundraising page. 

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Gid-e-on

Powerful Warrior, Mighty Warrior, Hero

This is my Gideon or Gidster as we call him. He just turned eight years old, which this momma is truly grateful for considering the ride we’ve been on these past years. Gideon was only 6 years old when he was diagnosed with Leukemia ALL. It was Friday, December 13, 2013. Our lives completely changed within the span of 6 hours. He had been looking sick to me. Really, there were no other indications that anything serious was going on. He had had a well check visit just two months before and everything was great – blood tests and all.

The week I decided to make an appointment he was tired and not playing with the amount of energy that a 6 year old boy usually does. We went to our pediatrician and they sent us straight to The Children’s Hospital at Scottish Rite. He was diagnosed with Leukemia in just a couple hours. There were two really long walks that day. The first – when the doctor asked us to walk with her down to the consultation room, where we received the news. The second – walking back to the floor for children with cancer, passed the pictures of the bald children with cancer. That was our world now, everything had changed. We were in the hospital for the next 18 days. We spent our Christmas there. It was the best and worse Christmas we’ve had. We were forced to let a lot of things go and focus on the things that really matter, which was our family, our faith, and our Gidster. We were blessed by the service of so many and it was truly humbling. Finally on New Year’s Eve we got to take him home.

The first few weeks were especially rough. It was obviously heartbreaking for mom and dad but his older siblings were heartbroken too, and his younger sister was suddenly without her best friend. Sometimes I would cry and grieve for the loss of the future I had dreamed about for him. Where had my Gideon gone? Glad was I when he started to display signs of his fun and jokester-like personality. Pretending to trip in the hallway and messing with the nurses by calling them to say, “Um my infusion is complete.” Whenever we were able to we would leave the room and go play around the hospital, making friends and playing video games in the Zone. Gidster’s doctor once commented, with a smile, that he wasn’t doing this right. He should be in his room moaning and groaning instead of running and playing through the hospital.

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September 4th, 2015

CURE Childhood Cancer Honors Emma

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Emma. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Emma’s fundraising page. 

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Emma was barely 2 ½ years old in June 2009. Our sitter told us she noticed an odd light reflection in Emma’s right eye. The next day I called my own optometrist and they fit us in that afternoon. Within the next few days we were referred to a Pediatric Opthamologist and a Pediatric Retina Specialist at Emory University. Emma endured endless eye exams and tests over the next 6 days and ultimately on June 19, 2009 her diagnosis was confirmed after an MRI. Our little girl had Retinoblastoma, a very rare malignant eye cancer, growing behind her right eye.

I was 7 months pregnant then with our second child. We had a new baby on the way and our precious baby we already had was about to fight a very grown up disease. We were devastated. On June 29th we checked her into Children’s Healthcare of Atlanta – Egleston for surgery to have her enucleation. She recovered quickly from the surgery and was back to her normal 2 ½ year old antics in just a few days! When the test results came back we found that Emma’s form of Retinoblastoma was not genetic and that the chances of our unborn baby inheriting the disease were unlikely. However, we found out that Emma had some “high risk features” involving her cancer and would need chemotherapy. Emma had one more surgery for a port placement in her chest where she would have her chemo administered. She started chemo at the end of July 2009 at the Aflac Cancer Center at Egleston and she received her last chemo treatment in January 2010.

Just two days after Emma’s second chemo treatment, Bella was born. That day tiny Bella gave her big sister the greatest gift she could– Hope. We were able to bank Bella’s cord blood for Emma’s future. Bella was just 2 weeks old by the time Emma went back to Aflac for her third round of chemo. In those 6 months we were trying to find some kind of freakishly odd balance between caring for a newborn, traveling with Emma to the hospital for two days of outpatient chemo every six weeks, and helping Emma to navigate the new challenges of wearing glasses as a pretty active 3 year old as well as taking her to get fittings done for her new prosthesis she would have to wear. Each day we would say another prayer and we would look at her and still see our Emma, bright and cheerful and full of life. That alone got us through the worst days when we just could not seem to comprehend what was happening.

Emma will start the third grade this year, and she continues to grow and shine and face life head on with so much fierceness– we couldn’t be more proud of her as she celebrates another year of being cancer free.

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September 4th, 2015

CURE Childhood Cancer Honors Jonathan

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Jonathan. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Jonathan’s fundraising page. 

Jonathan Thomas

On November 25, 2014, Josh and I heard the words that every parent dreads to hear, “Your child has cancer.”  When the shock wore off, we thought, “Why us, and why our little boy?” As a mother, I reflected on myself and couldn’t understand what I did wrong. I couldn’t imagine our little 7-month-old being diagnosed with cancer. He hadn’t even been out in the world for as long as he was inside my belly. The doctors gave us the final blow; “Infantile leukemia is very deadly, and infants usually don’t make it.” It took the breath out of my husband and me. For the first 30 days, we lived in the hospital, watching our little baby go through the induction phase of chemotherapy. This phase was hard to watch due to the potency of the chemotherapy itself and waiting for the side effects to happen.  To the amazement of the doctors, Jonathan was home by Christmas and fighting with everything his little body had.

Due to CURE, improved research, and the strength of our child, our son is now 15 months old. He is continually fighting Acute Lymphoblastic Leukemia with everything he has and amazingly growing up to be a strong toddler. His smile shows how much strength is inside him, and he never slows down. My husband and I have looked at the bright side of this deadly disease. We are happy that someone like Jonathan was diagnosed with this, because he’s strong enough to make it through. Jonathan Joshua is our hero!!!!

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September 3rd, 2015

CURE Childhood Cancer Honors Lake

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Lake. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Lake’s fundraising page. 

Lake Bozman Photo

From the outside, Lake looks and acts like the typical seven-year-old boy, playing sports, wrestling with his little brother, and running around with friends. On the inside, however, he is anything but typical. Lake has AML, Acute Myeloid Leukemia, something that I never imagined my child would have. Since birth he has always been extremely healthy, only going to the pediatrician for his well visits. In the spring of 2012, he started having ear infections and some sinus issues along with fevers that just wouldn’t seem to go away and stay gone. Then he started becoming exhausted all the time, which is just not normal for him at all. Finally the day after Mother’s Day our pediatrician ordered blood work and after reading the results sent us straight to Scottish Rite Children’s hospital where they diagnosed him with Leukemia. We were completely devastated, but there was no time for all the how’s and why’s. The next day his central line was put in, we moved over to Egleston Children’s Hospital, and he started chemo. Four rounds later he was in remission without hardly any complications or sickness, and we were home again as a family. He was back at school, playing baseball, and was about to have a new baby sister. Then in April of this year at his routine clinic visit we found out it was back. Once again, total shock and devastation.

So here we are now just completed two more rounds of chemo and getting ready for a bone marrow transplant. The transplant is by far the biggest challenge we have faced. Lake is going to be very sick and he will be unable to see his little brother and sister for a long time; but if this is what it takes to get him well and in remission forever, then we can handle it.

Our hope and prayer is that Lake will get through this transplant and that he will go back to being a regular child and grow to live out all his dreams. Not in a million years did I think my child would be diagnosed with cancer, but he was. It can happen to anyone. We have been truly blessed to have such an amazing support system, and I know our faith in God and all the many prayers for Lake have gotten us through this. My hope is that, through organizations like CURE, other children and their families will not have to go through what we have gone through. No child should have to endure what these children with cancer go through every day. While most children are playing with superheroes, these are heroes in real life, and my son is one of them!

*August 2014 Update on Lake: After completing 2 rounds of chemotherapy and radiation, Lake had his transplant on August 5th, 2013. It was a difficult few months, but Lake as always was a total rock star and did great. He was 100% donor cells and in remission. He came home about a week before Halloween and, slowly but surely, things began to get back to “normal.” He returned to school in late spring of this year and even played baseball. We were almost to a year post transplant and then, at a routine checkup in May, we found out he had relapsed once again. To say we were crushed is an understatement. We are now praying for a miracle. Although Lake’s cancer has been labeled as “incurable,” we are not giving up! This is where CURE and YOU come into play! With donations from people like you to organizations like CURE, my son could beat this again! He was, is, and always will be my Hero!

*July 2015 Update on Lake: After his relapse, we continued some different chemotherapy treatments to keep his disease at a minimum. He was able to do many things, like go to Camp Sunshine, go on his Make-A-Wish trip (a Disney Cruise), go to school, be at home with his family, and even signed a one day contract with the Atlanta Hawks Basketball Team. He was doing well but then suffered a huge setback when he got pneumonia and his body went into septic shock. It was then we learned that his heart was at very low function and that a transplant was no longer an option. We continued more gentle chemos until his body just became too tired, and on May 1st of this year he went home to be with Jesus. We miss him like crazy but take comfort in knowing that he is now cancer-free and perfect once again. We plan to keep Lake’s memory alive by sharing his story and continuing to raise awareness for childhood cancer. Our prayer is that, with originations like CURE, we will find a cure to this awful disease!!

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September 3rd, 2015

CURE Childhood Cancer Honors Chloe

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Chloe. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Chloe’s fundraising page. 

Chloe Hanson

Chloe was diagnosed with Langerhans Cell Histiocytosis when she was 20 months old. Chloe courageously spent the following 12 months enduring chemo treatments, PET scans, biopsies, x-rays, neurological appointments, as well as mommy giving her daily chemo and prednisone at home.

A month after we celebrated Chloe being in remission, a PET scan revealed that the Langerhans Cell Histiocytosis was back. Chloe is currently in her second round of chemo treatment.

Sophia, Chloe’s twin sister, mommy and her grandparents are so proud of our sweet girl, and we so admire her strength. All of us are staying positive and believe that this round of chemo will be her last. Chloe will be 3 years old in August. That means for half her life she has been in treatment and battling Langerhans Cell Histiocytosis.

No child, sibling, or family should have to endure this much pain. If you can, please help by donating in Chloe’s name today. Childhood cancer needs to be eliminated for good.

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September 3rd, 2015

CURE Childhood Cancer Honors Liam

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Liam. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Liam’s fundraising page. 

Liam Howell

My name is Liam, and on August 1, 2007 I was born with a rare pediatric cancer called congenital fibrosarcoma. At 2 days old, I had major surgery to remove the tumor that was 10 cm in diameter protruding off my back. When my surgeon went in, he found part of my tumor had rooted in my abdominal wall. Mommy and Daddy learned the tumor had grown through the gaps of my ribs and into my lung cavity while I was forming in Mommy’s womb. Fortunately, it didn’t metastasize. I began chemotherapy at 2 ½ weeks old, and after 2 rounds of chemo, my tumor began shrinking out of my lung cavity and thinning through my ribs. I continued chemo and tolerated it well considering what it does to the body.

There were challenges, but my doctors remained positive I would beat my cancer. At 3 months old, I developed a rare side effect of chemo called VOD (veno occlusive disease)—it affects the function of the liver. My liver recovered faster than the doctors expected, and it is completely healthy now. At 9 months old, I finished my 9th round of chemo. I had a biopsy to check for any remaining cancer tissue, and the results showed the tumor tissue was gone!! What remained was normal and showed zero similarities to my original tumor. My oncologist, who I love dearly and still enjoy visiting, decided it would be wise to do 2 more rounds of chemo to kill any microscopic cells left. In April 2008, I had my last push of chemo, and in May 2008 I was officially in remission! Over the next 2 years, I was checked frequently through CAT scans and MRIs, but now I am so happy to announce that as of July 20, 2012 I am officially a cancer SURVIVOR!! I no longer need any scans, and will be entering a survivorship program at CHOA.

My journey with cancer has completely shifted. My possibility of scoliosis was high because my spine had to form around the tumor, but treating cancer was most important. At 2 yrs old, scoliosis became real, and I was diagnosed with a severe 70 degree curve in my spine. If uncorrected, my left lung wouldn’t develop to adult capacity. In January 2009, a VEPTR growing rod was placed in my back. For the 1st time, cancer took a back seat, and that is wonderful news to any cancer patient! 3 days after the VEPTR surgery, I was running around like normal! Cancer never stopped me from being a high-energy little boy who soaks up every ounce of life, and neither did this! For 6 months I wore a back brace, but Mommy and Daddy convinced me it was my “Iron Man” gear. In July 2010, I had my first of several VEPTR lengthenings—I did great with that surgery, and my spine is down to a 45 degree curve! Since then, I have grown into a tall, active, handsome little man who loves school, Legos, superheroes, and spending time with my family watching the Cosby Show. I grew so tall that this past May I had to have the entire VEPTR system replaced. It was a very hard surgery for me that involved moving muscle and bone around. I was super brave, but recovery was long and painful. I am good to go now, and I even told Mommy I am grateful for the VEPTR rod because it helps me not tilt and to be active like normal boys and girls.

One of my favorite things in life is being a big brother to my sister Abbi. She drives me crazy sometimes, but she is my best friend. We do everything together; we love to have campouts in my room, dance parties to Rio 2 sound track, and I even let her play with my Legos…sometimes. I am in third grade and am fluent in Spanish. My school is an immersion school, and I love learning in other languages. My favorite sport to play is baseball, but I watch every sport ESPN has to offer! I am a solid Braves and UGA fan. You won’t convince me to love any other teams. My parents remain strong, and my family feels blessed to have the doctors and support we have had over the past seven years, and CURE has played a major role in that!!

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September 3rd, 2015

CURE Childhood Cancer Honors Katie

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Katie. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Katie’s fundraising page. 

 

Katie Adams Photo

Back in February, 2014, Katie had a fever for 3 days. After going to our pediatrician and being tested for everything under the sun, I brought Katie back to the pediatrician on February 4th because she started showing symptoms of meningitis. We were immediately sent to Scottish Rite for a spinal tap test to see if Katie actually had meningitis. The spinal tap came back clear but the ER doctor wanted to have a CT Scan done to see where the pain was coming from in her neck. A few hours later we were sat down and told that Katie had a brain tumor. Our world came to a sudden stop! A neurologist came in to speak with us and told us that Katie had a lot of pressure in her head and he wanted to drain the fluid pressure by performing minor surgery that night to put a drain in her head. After the 45-minute surgery, we were told that everything went great and they were very happy they put the drain in. The pressure in her head was 30%, and normal pressure was 15-20%. The next day Katie had an MRI, which revealed a total of 4 tumors. Three of the four were in her brain and one was on her brain stem on her spine.

The next day, Katie had emergency brain surgery that lasted 8 hours to remove the tumor that was on her brain stem on her spine. The doctors mentally prepared us for her to be completely unconscious for the next 24-48 hours to control the swelling on her brain as well as having tubes in and all over her body. When her surgery was complete the doctors came into the waiting room with the biggest smiles on their faces and said, “She’s awake, smiling, and talking…She’s a FIGHTER!” They couldn’t believe it!!! God and a ton of angels were watching over her that day. We stayed in the hospital for about 2 1/2 weeks during her recovery. We were home for 2 weeks before we went back to the hospital to begin chemotherapy for the next 6 months!
The first cycle of chemo went great until we got home. Four days into us being home, Katie became very dehydrated, couldn’t keep any food, water, medicine, etc. in her system. She lost a lot of weight and became very pale. I took her into the ER and we ended up being in the hospital for 1 month and 1 day. Most of that time was spent in the PICU. One of the chemo drugs caused Katie’s lining in her stomach to be torn out, which is called typhlitis. Before going home, Katie had a central line put in her chest for the last 3 cycles of chemo and transplant and a G-tube put in her stomach to help with meds, feedings, hydrating, etc. It has been wonderful!

The last 6 cycles of chemo have been great for Katie. We continue to treat Katie’s tumor with oral chemo at home and will continue to do so over the next two years as she is in a high risk for relapsing in this time frame. We continue to get quarterly MRI’s and weekly labs, and doctor visits to make sure Katie is in good health!

Katie has had such a great mindset and spirit throughout this entire process! She is still the same loveable, sweet, energetic girl! We are hoping and praying that all goes well and after all that Katie has endured we can say, “We Beat Cancer!!!”

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September 2nd, 2015

The Art of Healing: Stars of HOPE Program Hosts CURE Event

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At CURE Childhood Cancer, we believe that any tragedy can be turned into hope through service. Our friends at New York Says Thank You Foundation believe the same! New York Says Thank You Foundation will have a series of events this month to commemorate the 14th Anniversary of 9/11 and shed light on the positive lessons of citizenship shown on 9/12 by encouraging communities across the U.S. to host local Stars of HOPE community painting events at their schools, places of worship or neighborhoods.

In partnership with Groesbeck Rebuilds America, the Stars of HOPE therapeutic painting program empowers children to use the healing power of art for good in the wake of tragedy or disaster. For the past few weeks, Stars of HOPE volunteers in Georgia have been making Stars of HOPE for 5-year-old Hudson Lillystone of Alpharetta for a special community painting event. The stars will be used to uplift Atlanta-area families who are battling cancer as well as raise funds for pediatric cancer research!

The Stars of HOPE Georgia community will host a CURE Childhood Cancer painting event on Saturday, September 5th at Alpharetta Elementary School from 10 am- 3 pm. Join CURE, volunteers and families this weekend as we aim to strengthen communities in need and impact at-risk youth and families.

 

Stars of Hope Painting Event for CURE

Saturday, September 5, 2015

10 am-3pm

Alpharetta Elementary School

192 Mayfield Road, Alpharetta, GA 30009

 


September 2nd, 2015

CURE Childhood Cancer Honors Watson

September is National Childhood Cancer Awareness Month. Join us today as CURE Childhood Cancer honors Watson Dufresne. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Watson’s fundraising page. 

Watson Dufresne Photo

On December 10, 2009, our son, Watson, was diagnosed with Acute Lymphoblastic Leukemia. Life as we all knew it would never be the same. We would forever have knowledge and expereiences that would change our perspective on everything. Immediately, he began 9 months of intense chemotherapy treatment to eradicate the cancer cells from his blood. These efforts left our son sick, hospitalized, homebound, and with a severely compromised immune system. His bald head was the least of our worries. For the next 2.5 years, he continued daily treatment in a maintenance program that required a significant sacrifice for Watson and our way of life. God willing and ever thankful, after 3 years, 4 months, and 4 days, Watson finished his regimen of chemotherapy on April 13, 2013. As of today, Watson has been completely off treatment for nearly 2.5 years!! We feel so blessed, and we are spending every moment grateful for the chance to be “normal.”

Through our experience, our eyes have been opened to a world of suffering and need. While Leukemia is the most common and treatable form of childhood cancer, there are no guarantees. Also, treatment comes at an immeasurable cost. In the past sixty years the overall survival rates have risen from less than 10% to almost 80%. This is significant progress, but 1 in 5 children with cancer do not survive; it is the #1 cause of death by disease of children. Still, only 2% of federal funding for cancer research is focused on childhood cancers.

Based on these statistics and our personal experience, we feel compelled, guided by a moral obligation for our children, to push forward and cure childhood cancer in our lifetime. We’re seeking to raise funds again this year for pediatric cancer research through CURE Childhood Cancer. CURE is one of the amazing organizations in the state of Georgia that has supported our family since our diagnosis. Without their past and present support, I can’t even begin to imagine where Watson and our family would be in our fight against cancer.

We are so proud and humbled that Watson’s Warriors have jumped on board with our vision to make an impact on childhood cancer. Since 2011, Watson’s Warriors have raised and donated over $39,000 for CURE! The amount of children and families you are impacting is staggering!

Since diagnosis and throughout treatment, we’ve tried to root ourselves in the truth of Romans 5: 1-5. This experience has literally brought us to our knees and taught us the dependency on God. It has also taught us the cycle of suffering, perseverance, character, and hope… and hope does not disappoint us because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. Please consider partnering with us again this year to build hope for children and families fighting cancer.

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    GO GOLD THIS SEPTEMBER

    September is Childhood Cancer Awareness Month and there are many ways individuals, groups, companies, and schools can #GoGold4CURE. Click here to download flyers and posters, view fundraising ideas, and learn how to support some of CURE’s GOLD partners.

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    BELIEVE IN A CURE

    Your donation to CURE Childhood Cancer directly supports CURE’s $2.5 million commitment to research aimed at finding cures for the 20% of children who do not survive their battle with cancer. In addition, it supports CURE’s Patient & Family programs, meeting the critical and urgent needs of our families.