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childhood cancer
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Food and Drug AdmistrationChildhood Cancer deserves more attention and investment from the Pharmaceutical IndustryFirst, it often starts with a little pain, and the pain keeps growing more and more extreme, day by day until the parents hear these terrifying five words: "Your child has cancer." Every day, 43 children would have their childhood taken away by cancer. Since 1980, only fewer than ten new drugs have been approved that were specifically developed to treat children with cancer. The pharmaceutical industry put in a lot of investment for drug development in adult cancers. Evidently, in the last 20 years, 190 new cancer treatments for adults have been discovered, comparing to roughly ten drugs for childhood cancer use. For the investment and effort in childhood cancer drug development? Almost none because they see that childhood cancer makes up a small portion of the total cancer patient population, which makes the investment in childhood cancer not profitable. Besides the ignorance of the pharmaceutical companies, the lack of clinical trials for new drug developments was also due to the low funding from the government through the National Cancer Institute. According to the NCI Funded Research Portfolio, the average percentage of invested funds into childhood cancer is 4% for over the past 10 years.Many pediatric cancer patients get treated with drugs invented for usage in adults. Due to the toxic substances exposed to their growing body as a child, the recovery was a bittersweet thing, when they often develop several chronic health issues and even another type of cancer later in life. Yes, there are fewer cases of pediatric cancer diagnosed. Yes, it's true more adults indeed get cancer than children. However, by putting more effort into finding more treatment options and safer chemotherapy chemicals for childhood cancer, we can save all those years when a kid could grow up and have a future, with their dreams and passion. No child deserves to have their childhood and the beautiful innocence of a child taken away. The purpose of this petition is: Spreading aware about the current issue in the pharmaceutical industry. The message that we want to spread is that lives of childhood cancer patients worth more than profits. Better regulate the pharmaceutical companies to protect cancer patients' interest Stop treating cancer like a huge money-making opportunity. Although childhood cancer makes up a small portion of the total cancer patients population, childhood cancer isn't rare. And childhood cancer patients' lives matter! Putting in our voice into the fight for better funding in childhood cancer. Children are worth more than 4% of the funding budget!
Cancer Relief10,6379/24/20
US Occupational Safety and Health Administration, International Agency for Research on Cancer, Consumer Product Safety CommissionPREVENT LEUKEMIA - List/Label ALL benzene concentrations in consumer productsMy 14 year old son died from acute myeloid leukemia (AML) in 2019. In researching possible causes for this horrid disease, two are at the forefront - X-rays and exposure to benzene. Literature notes that no level of benzene - a CATEGORY 1 CARCINOGEN - is safe. Despite this, benzene is not required to be listed on a safety data sheet (SDS) or label, if the product contains less than 0.1%. While 0.1% might not sound like a lot, it represents 1000 ppm, and volatilizes into the air quickly. So, 999 ppm is allowed without notice or labeling? My son was exposed to art products in 2017 ('non-toxic' oil paints, odorless mineral spirits, and other art/craft products) containing benzene, and the products were not labeled as such nor did the SDS list benzene as an ingredient. In fact, one of the products didn't even contain an "expected" California Prop 65 warning - why? Because in tiny letters, the product is not for sale or use in California! OSHA regulates levels of benzene in the workplace. The maximum allowable amount of benzene in workroom air during an 8-hour workday, 40-hour workweek is 1 ppm. But what about the art student, at-home hobbyist, crafter, woodworker or DIY'er - in close quarters with these products and without the proper safety information to take precautions, or even for a parent to make a choice between products? These materials were purchased at a well-known family arts and crafts store. Did benzene kill my son? I will never know. Was he genetically susceptible? Possibly. But benzene is a KNOWN cause of leukemia. LET'S REQUIRE BENZENE TO BE LISTED. The SDS and label for a product containing benzene at less than 0.1%, SHOULD, pursuant to Hazard Communication Standard requirements, IDENTIFY BENZENE AS A HAZARDOUS INGREDIENT.
Lisa Johnson3737/26/21
Senator Anthony Bucco, Senator Joe PennacchioRaise Awareness about Childhood Cancer in New JerseyThe incidence of pediatric cancer is ever-increasing, and its impact on society and the families of those affected, devastating, yet surprisingly little progress is being made toward uncovering the causes of childhood cancer and finding new and targeted therapies. Cancer is the leading cause of death by disease in children under the age of 15 in the United States, and every year, approximately 13,500 children and adolescents under age 20 are diagnosed with cancer. More children lose their battle with cancer each year than to AIDS, asthma, cystic fibrosis and diabetes combined. The majority of those children that survive childhood cancer go on to experience chronic medical problems as a result of their treatment, detracting from their quality of life and diminishing their ability to contribute fully to society. Side effects are both physical, such as hair loss, changes in body shape, and infertility, and mental, such as depression, anxiety, fatigue, delirium, and symptoms of PTSD. Not only do patients and survivors experience this, but so many challenges come with treatment that parents and siblings of pediatric cancer patients are also scarred for life. Pediatric cancer encompasses multiple types and subtypes of cancers, the causes of which are largely unknown. Unlike certain adult cancers, pediatric cancer is not strongly linked to lifestyle and strikes randomly, across all ethnic groups, socioeconomic classes and geographic regions. Currently, less than 5% of federal funding for cancer research is dedicated specifically to understanding and seeking cures for pediatric cancer, and only three drugs specifically targeting childhood cancer have been approved in the past 20 years. Right now, we have a unique opportunity to support childhood cancer research in our home state by taking action on S1431 & A3800. This legislation will create a New Jersey Pediatric Cancer Research Fund, and if this bill passes, state residents would have the option to make a voluntary contribution to the fund through their state income tax return filed in the spring of each year. Additionally, the bill calls for $1 million in state funding each calendar year to be designated to state-level pediatric cancer research institutions. NJ is ranked third in the country for pediatric cancer incidence rates (per 100,000) and it is critical to take action for our children. Now, the bill has been reported from the Senate Committee with Amendments for a 2nd Reading, but it still hasn't been passed. We need to take quick action to support this critical legislation, because it can save the lives of thousands of children who did nothing to deserve a diagnosis that changed their life forever. Please, help show the government that this legislation is not extra, but a necessary base from which we can grow in our fight to end childhood cancer.
Vidhi Bansal2145/29/21
World Health Organizations, NCI, Kamala Harris, President of the United States, United NationsNo kid deserves only 4%*No kid deserves only 4%* When a kid is diagnosed every 2-3 minutes & also dying in minutes difference, it is still called rare. Childhood cancer is a problem that we all need to collaborate on, we need to stand and support with all voices. A kid with cancer is a symbol of strength but not rare ones. Not only one kid by thousands of children all over the world are newly diagnosed each year and they still call it rare.Many kids are suffering, they are having mostly the same medication as the adults, all those painful therapies they go through are unbelievable.Though this all-hard path of each kid is tough, NCI only budgets 4% for our strong warriors. In every kid with the cancer journey, there are tons of side effects of the treatments exist. This could be for many reasons but the main causes are the kids don't have matured bodies to have the treatments. They used to have a lot of internal and external side effects. So to decrease this hard pain that each kid suffers. We can support and stand for them. For better medication, for more researchers, for better therapies, etc. So here we raise our voice and stand that childhood cancer isn't Rare. sign and share this petition to reach the goal. Thank you for your great support. #No kid deserves only 4%
Yasmin Ahmed3786/28/21
Ban waitstaff from using pronouns!Two and a half years ago my 10 year old sister, Samantha was diagnosed with Leukemia (blood cancer). After starting rigorous chemotherapy treatments she lost all of her hair. A few months later when she felt well enough to go out to restaurants, we started noticing many, if not all, waitstaff called my sister: sir, buddy, son. "Sir, what would you like", "what about you, buddy", “and for you, son”. My sister who is going through cancer shouldn't have to feel like she looks completely different as the opposite sex on top of fighting for her life. So let us do a favor to many young children going through cancer and other diseases which cause hair loose around the world and ban waitstaff from using pronouns!Kathryn Huber168/15/23
National Cancer InstituteMore childhood cancer fundingI was diagnosed with alveolar rhabdomyosarcoma, a childhood cancer, at age 13. This is a very aggressive soft tissue cancer that forms in the muscles and can spread throughout the whole body. I was diagnosed as stage 4 and had to go through 54 weeks of chemotherapy and radiation. since I was diagnosed in 2014 I have relapsed 4 times, gone through surgery, over 130 radiation treatments, 114 weeks of chemotherapy and countless side effects. The chemotherapy given to children is the same drugs my 56 year old mom would have gotten at my age. A new drug hasn’t been created for childhood cancer in over 70 years. with that said, 43 children get diagnosed everyday and that’s only in the USA. It’s estimated that over 300,000 kids get diagnosed with this disease every year worldwide. Globally, cancer has stolen 11.5 million years of healthy life away from children in 2017. This total could be lower, if all children received healthier drugs and new treatment options. Only 4% of the billions of dollars the government spends annually on cancer research is directed towards treating childhood cancer. That means 1 cent of every dollar given to the American cancer society goes to children’s cancer. I have made so many close friends over my years of fighting cancer and I have lost many of them. I am also starting to run out of treatment options as I keep relapsing. Please sign this petition to get more funding towards this horrible disease. Every kid deserves a chance.
Megan Bugg9,6636/27/20
United States Department of Health and Human Services, United States Supreme Court, Centers for Disease Control and Prevention, Centers for Medicare and Medicaid, Human Rights Campaign, President o...Availability of Scans and Testing for Early Detection of Childhood CancerAbout 10,500 children in the United States under the age of 15 will be diagnosed with cancer in 2021. Cancer is the number one cause of death in children by disease in the US. My son Jameson was diagnosed in May with High-Risk Neuroblastoma, which accounts for 3.8% of all childhood cancer diagnoses and has a 50% 5-year survival rate with relapse treatments almost always unsuccessful. There are over 650 cases each year in the U.S. Being here at St.jude, it is indescribably heartbreaking watching my son receive such harsh treatments accompanied by daily vommiting,emense pain, mucositis throughout his entire GI, fever, the list goes on, that more commonly than not come with brutal long-term side effects(hearing loss,VOD, blood cancers, death and many more).I have talked with so many other parents with the same story as mine, "my pediatrician just wouldn't listen but I knew something was wrong". Jameson, now 4, vommited for 2 years prior to diagnosis, had a limp and extended stomach, but our pediatrician blamed it on excessive mucus, a gag relex, a weak stomach and whenever I would beg for a referral I was told "no, theres no allergens in his mucus","he just has a gag reflex"and "he will grow out of it". When I finally took him to Nicwonger Childrens Hospital instead of his doctor, they did 1 CT scan of his stomach and saw the 4x4x4 tumor on his adrenal gland and knew the diagnosis immediately. We were flown to St.Jude within 16 hours where we found out it had metastasized throughout his bones(blood marrow 80%cancer) and what our 10 month treatment would look like. It has been devastating and we are only halfway through. So many parents here with babies and children of all cancers have similar stories and had their children been granted a simple blood test or scan when their parent knew there was something wrong they would have had earlier detection and much higher rates of survival-therefore hope, less tormenting treatment, and possibly avoidance of loosing their homes, jobs, and most importantly their child's life. Even better, if parents had the option to have their child recieve a 1 time scan for cancer, the survival rate would increase tremendously, devastating side-effects of treatment would drop,and the cost-effectiveness is obvious. This would change our current statistics and give hope and life for so many! Please imagine hearing the words "your child has cancer" and help me advocate for a long overdue change. Thank you
Elizabeth Childress2,21510/20/21
John JoyceINCREASE FEDERAL FUNDING FOR CHILDHOOD CANCER RESEARCH FROM 4% TO 8% (ADLEY)Just 2 weeks shy of her second birthday, Adley Gordon was diagnosed with B-cell Acute Lymphoblastic Leukemia. B-cell ALL is a cancer that effects your B lymphocytes (white blood cells) that grow in the soft center of your bones, called marrow. B lymphocytes are supposed to grow into cells that fight off infections. However, in this disease, they turn into leukemia cells that live longer than normal cells and reproduce quickly. They build up in your bone marrow and move into your bloodstream. From there they can advance to other organs in your body. Symptoms depend upon the number of leukemia cells you have. But the most common symptoms include loss of appetite, fever, fatigue and night sweats. The 5-year survival rate of this specific cancer is 89% for children under the age of 20 years old.For roughly 3 days straight, Adley began showing signs that she was not feeling well. She was extremely lethargic and she did not want to walk. She was also very pale and her complexion was off. We immediately took her to see the doctor and on February 10th, 2022 she was diagnosed with cancer. We were shocked and never thought we would hear someone tell us that our child had cancer. Although the news was terrifying, we were determined that Adley was going to beat this ugly disease. It has been very difficult watching our sweet daughter suffer through her treatments knowing there is nothing we can do other than pray for her. She has already had to undergo 3 bone marrow biopsies as well as 6 or 7 spinal taps. Soon she will be starting the delayed intensification treatments. She is on a 2.5-year treatment plan and we are on day 150. Pediatric cancer is a worldwide problem. Every two minutes a family and their child are told of a cancer diagnosis. Cancer is the number one cause of disease related death in children under the age of 15 in the United States. According to the NCI, there has been a substantial increase in childhood cancers over the past few decades. In fact, the overall rate has increased 27% since 1975 in kids under the age of 19. Approximately 10,470 children in the United States under the age of 15 will be diagnosed with cancer in 2022. Each year, an estimated 400,000 children and adolescents worldwide are diagnosed with cancer. Every three minutes, a child with cancer dies. Survival often comes at a price. Despite advances in childhood cancer research, over 75% of children who survive cancer live with permanent side effects, some of which may include deafness, blindness, motor impairments, growth issues, organ failure, cognitive difficulties, fertility issues, psychological, neurological and endocrine disorders. Although advances in research have somewhat improved the chances of survival, many children still die from the disease. High-risk cancers still continue to have relatively low survival rates, between 7 and 31%. This is why it is crucial that we see the 4% federal funding for childhood cancer research rise to 8%. Our children deserve a fighting chance and at such a low percentage of federal funding that cannot happen quickly enough. Adley is such a strong-willed little girl. She amazes us daily at how well she is handling such a horrific disease. She is by far the bravest little warrior we know. She may get knocked down by treatments but she gets right back up to continue pushing herself forward. She gives my wife, her brother and myself the strength we often need. We know she will overcome this, but the fear of the unknown still lingers in our minds as much as we try to push it away. There is always the terror of relapse or long-term affects due to her treatments. Cancer does not discriminate nor does it care who it tries to destroy. It can come back with a vengeance and that alone is terrifying to think about. There is also the stress of having to travel to her treatments twice a week. The travel alone is 80 miles each way. But just like in treatments, there is no other option. The federal government is allocating a mere 4% for federal funding for childhood cancer research. This is not nearly enough to make a difference. By signing this petition, you will help facilitate lobbying and the advance of a healthcare policy that will designate a higher percentage of resources for childhood cancer research. Essentially this will give researchers more funding to do more testing and potentially find a childhood cancer vaccine. This would help decrease the time these children would have to fight as well as less suffering due to treatments. We are in need of 12 million signatures to advance to the next step in this process. Please stand with us by signing and sharing this petition so these children and families can be heard.GREEN CASTLE, PENNSYLVANIASuzanne Norden1,8788/16/22
Demand that Baycare not Drop Patient’s Insurance Mid TreatmentJohn and Christina Feely have lived every parent’s worst nightmare, when their daughter, Selah, was diagnosed with cancer in 2019, and then relapsed this summer of 2022. But now, as though they don’t already have enough to deal with, the hospital where Selah is getting her chemotherapy, St. Joseph’s Children’s Hospital which is managed by Baycare, has informed them that in a little over a month, they will no longer accept the family’s insurance unless Baycare can “come to an agreement” with the insurance company, Florida Blue. This is the SECOND time the hospital has done this to this family. The first time was six weeks into Selah’s treatment in 2019. Selah began treatment, the hospital accepted her insurance, and then SIX WEEKS into treatment the hospital suddenly decided that they weren’t going to accept her insurance anymore. What was the family supposed to do? Were they supposed to stop treatment now that it was totally unaffordable and let their child die??? Of course not! So instead they continued to bring their child for treatment, despite amassing tens of thousands of dollars worth of bills while they worked on getting a different insurance to take them, which was no easy task. Fast forward to now: despite finally being able to get a popular and widely accepted insurance in the state of Florida, the family has just gotten a letter informing them that unless Baycare and Florida Blue come to an agreement, Baycare will no longer accept Florida Blue insurance. Selah’s cancer isn’t going to stop growing because a bunch of executives can’t come to an agreement. John and Christina don’t get to push “pause” in their fight for Selah’s life. The family HAS insurance. They pay for insurance so that their daughter will be well taken care of. Selah is mid treatment. As a cancer patient myself who looked into being able to switch chemo providers, I was told that it’s considered a liability to take a patient who starts chemo in different location. So Selah doesn’t have many options. Her oncologist at St. Joseph’s knows her. The nurses who administer her chemo know her. Even IF she could find another Children’s Hospital to take over her care, transferring mid treatment is NOT in her best interest. Therefore we ask: 1. Baycare to “come to an agreement” with Florida Blue to be able to continue accepting that insurance. 2. If an agreement cannot be reached, we request that Baycare allow Selah and all other Florida Blue patients to finish their treatments without being charged a cent. These patients began treatment with the understanding that Baycare accepted their insurance. Baycare’s sudden decision not to do so should NOT affect their care. 3. Finally, we ask that Baycare forgive the debt amassed when Baycare suddenly decided not to accept the family’s insurance back in 2019. Again, you can’t change the rules in the middle of the game. Accepting a patient’s insurance and then, once you basically have them as a captive patient, suddenly deciding to not accept their insurance anymore, is not acceptable. It’s Baycare’s fault that the bills were amassed, so no one but Baycare should be on the hook for them.Elizabeth Sowder1,6738/25/22
Save Tufts Children's Hospital in Boston!On January 20th, 2022, the staff and families of patients of iconic and historical Floating Hospital for Children in Boston, aka Tufts Children's Hospital, learned in a blindsiding Zoom call and hurried press releases that this historic and fabled Boston institution would be closing its doors for good to children effective July 2022! This historic hospital has been in existence for more than 100 years and now the operators of the hospital want to close its doors and its 40 children's hospital beds and replace them with beds for adults because there is more money to be made in adult healthcare than childhood healthcare. Thousands of children's lives have been saved by the dedicated staff of incredible professionals at Tufts Children's Hospital over the past 100+ years - why, because of ONE simple reason - they CARE!! If you are of the belief that this hospital should NOT close and that human beings, especially children, should not be discarded because of calculations on a spreadsheet, and if you want to protect the families and staff that work so tirelessly on behalf of their patients, past, present, and future, at Tufts Children's Hospital, I implore you to sign this petition and urge the CEO, hospital administrators, Governor Charlie Baker , Mayor Michelle Wu and all Massachusetts Legislators to stop this tragedy. Kids deserve better. Families deserve better. The incredibly amazing staff deserves better. This is so wrong on every single level imaginable...please help us give a voice to these innocent children.Concerned Parent70,8411/21/22
- Ban waitstaff from using pronouns!Two and a half years ago my 10 year old sister, Samantha was diagnosed with Leukemia (blood cancer). After starting rigorous chemotherapy treatments she lost all of her hair. A few months later when she felt well enough to go out to restaurants, we started noticing many, if not all, waitstaff called my sister: sir, buddy, son. "Sir, what would you like", "what about you, buddy", “and for you, son”. My sister who is going through cancer shouldn't have to feel like she looks completely different as the opposite sex on top of fighting for her life. So let us do a favor to many young children going through cancer and other diseases which cause hair loose around the world and ban waitstaff from using pronouns!Kathryn Huber168/15/23
Curtis VallierJaycee's Law for Pediatric Cancer Funding in WIJaycee Rose Sunshine Vallier was diagnosed with and extremely rare form of Brain Cancer (Choroid Plexus Carcinoma) on January 30, 2020 and fought extremely hard for 520 days before laying down her sword on July 3, 2021 @ 4:15am. She endured so much in her short 8 years on this earth but made an incredible impact on everyone she met and so many she never had the chance to. During her Battle we became part of a family of fighters and advocates for the betterment of treatments and research for childhood cancer, but this all centers around funding. we all know the #morethan4 but few know what it truly means. It means that our children are given drugs meant for adults, treatments that are outdated and protocols and are under researched. This has to change and it all starts at the state level. Jaycee's Law (SB112) allows WI corporations to donate their tax dollars to pediatric cancer research centers in the state while receiving a credit from WI. it was mirrored after a similar bill in PA (SB74) and is a blueprint for success across the country, we urge you to sign this petition and also petition your local state legislators to do the same. Bill Text can be viewed Here Wisconsin Legislature: SB112: Bill Text
Trish Vallier1,8079/7/22
Make American Girl Bring Back All Bald DollsAmerican Girl used to have 4 bald dolls available. On September 8th, 2022 the company released 25 new Truly Me dolls and discontinued two of the bald doll molds. There is no longer an asian mold with no hair or a brown eyed medium skinned doll, and the only two left are blue eyed light skin and a dark skinned doll. The level of representation for kids with no hair was already so minimal that getting rid of two of the existing dolls has made it so that so few children fighting cancer, alopecia or related diseases can have a doll that looks like them. These dolls are so important, as they help to normalize not having hair and make children feel special and beautiful. It is terrible that American Girl decided to get rid of these two dolls. By signing this petition you will help us hopefully bring back these two dolls so that kids of all backgrounds can have a doll that looks like them. Representation matters.Heidelore Andringa3089/8/22- Demand that Baycare not Drop Patient’s Insurance Mid TreatmentJohn and Christina Feely have lived every parent’s worst nightmare, when their daughter, Selah, was diagnosed with cancer in 2019, and then relapsed this summer of 2022. But now, as though they don’t already have enough to deal with, the hospital where Selah is getting her chemotherapy, St. Joseph’s Children’s Hospital which is managed by Baycare, has informed them that in a little over a month, they will no longer accept the family’s insurance unless Baycare can “come to an agreement” with the insurance company, Florida Blue. This is the SECOND time the hospital has done this to this family. The first time was six weeks into Selah’s treatment in 2019. Selah began treatment, the hospital accepted her insurance, and then SIX WEEKS into treatment the hospital suddenly decided that they weren’t going to accept her insurance anymore. What was the family supposed to do? Were they supposed to stop treatment now that it was totally unaffordable and let their child die??? Of course not! So instead they continued to bring their child for treatment, despite amassing tens of thousands of dollars worth of bills while they worked on getting a different insurance to take them, which was no easy task. Fast forward to now: despite finally being able to get a popular and widely accepted insurance in the state of Florida, the family has just gotten a letter informing them that unless Baycare and Florida Blue come to an agreement, Baycare will no longer accept Florida Blue insurance. Selah’s cancer isn’t going to stop growing because a bunch of executives can’t come to an agreement. John and Christina don’t get to push “pause” in their fight for Selah’s life. The family HAS insurance. They pay for insurance so that their daughter will be well taken care of. Selah is mid treatment. As a cancer patient myself who looked into being able to switch chemo providers, I was told that it’s considered a liability to take a patient who starts chemo in different location. So Selah doesn’t have many options. Her oncologist at St. Joseph’s knows her. The nurses who administer her chemo know her. Even IF she could find another Children’s Hospital to take over her care, transferring mid treatment is NOT in her best interest. Therefore we ask: 1. Baycare to “come to an agreement” with Florida Blue to be able to continue accepting that insurance. 2. If an agreement cannot be reached, we request that Baycare allow Selah and all other Florida Blue patients to finish their treatments without being charged a cent. These patients began treatment with the understanding that Baycare accepted their insurance. Baycare’s sudden decision not to do so should NOT affect their care. 3. Finally, we ask that Baycare forgive the debt amassed when Baycare suddenly decided not to accept the family’s insurance back in 2019. Again, you can’t change the rules in the middle of the game. Accepting a patient’s insurance and then, once you basically have them as a captive patient, suddenly deciding to not accept their insurance anymore, is not acceptable. It’s Baycare’s fault that the bills were amassed, so no one but Baycare should be on the hook for them.Elizabeth Sowder1,6738/25/22
Tom GannINCREASE FEDERAL FUNDING FOR CHILDHOOD CANCER AWARENESS (Emmett)Emmett Barrett was diagnosed on July 29th, 2021, with B-CELL Acute Lymphoblastic Leukemia at just 2 years old. B-CELL ALL is a type of acute lymphoblastic leukemia. It is a cancer that affects white blood cells known as B-cell lymphoblasts. Children with this type of cancer have too many immature B-cell lymphoblasts in their bloodstream and bone marrow that do not work correctly. With this type of cancer, the cells replicate and divide more rapidly and release immature white blood cells. These are called leukemia cells. The most common symptoms of B-CELL ALL are weight loss, fever, reduced appetite, pale skin and fatigue. This cancer can also cause anemia as well as infections. For children with B-CELL ALL the 5-year survival rate is 85%. Emmett had not been feeling well for a few weeks. When he began experiencing fever as well as feeling ill, we immediately took him to see a doctor. They quickly diagnosed him with strep throat and sent us home. Things did not improve so we took our son back to see another doctor. We were finally able to get someone to listen to us and do blood work. Once the results came back, we were given the news that no parent is ready to hear. Our son had cancer and it was like a punch in the gut to hear those words. Within 48 hours we were sent to St. Jude hospital for 2 months away from our family. We were terrified and had no idea how much cancer was about to change our lives forever. Treatments began and as a parent it was especially hard watching our son in pain. Knowing what was being pumped into our child's body was meant for an adult, was terrifying. There were no other options, but no matter the course of action, we would and will do anything to save our sons life. Steroids also cause side effects. Emmett often becomes irritable and cranky. It can often cause a child to become very sensitive or emotional. But this is justvanother choice we do not have. Despite his treatments, lumbar punctures, the constant poking and prodding and the numerous other things he has to endure, Emmett remains a true warrior. If we ever are struggling, he is who we get our strength from. Childhood cancer is not just one disease. There are numerous types that can be found in different areas throughout the body. Cancer is diagnosed each year in approximately 400,000 children and adolescents ages 19 and under worldwide. That is over 1,000 new children affected every day. In the United States, cancer is the leading cause of death by disease past infancy for children. That means approximately 1,800 children die each year from this ugly disease. Childhood cancer rates have been rising slightly for the past few decades. Even children who are cured, may suffer long-term side effects as a result of the cancer treatments they received. Too many children are fighting for their lives and something needs to change. This is one reason it is so essential that we see the 4% federal funding for childhood cancer research rise to 8%. Isolation has often been one of the toughest things for our son as well as our family to face. We cannot risk our son getting sick. Due to this, we were unable to go out in public much unless it was absolutely necessary. It can often become very overwhelming and feel extremely lonely. Sadly, cancer does not care how it affects anyone. It comes in without warning, such a vengeance and is determined to stay. These children fighting every day to beat this horrific disease should not have to live the way they are forced to. It is not fair and we desperately need more funding for research. Without it nothing will change and more children will be fighting to live. This is why we are so passionate about spreading awareness about childhood cancer. We need more people to listen and truly understand how horrendous childhood cancer is. The federal government is allocating a baffling 4% for federal funding for childhood cancer research. This is not nearly enough funding to help these children and the researchers trying to find a vaccine or ultimately a cure. By signing this petition, you will be helping to facilitate lobbying and the advance of a healthcare policy that will designate a higher percentage of resources for childhood cancer research. This is necessary to make a difference and potentially end childhood cancer. We are in need of 12 million signatures to advance to the next step. Please sign and share this petition and stand with us to end childhood cancer. LOCUST GROVE, OKLAHOMALori Engel2708/16/22
Bill JohnsonINCREASE FEDERAL FUNDING FOR CHILDHOOD CANCER RESEARCH FROM 4% TO 8% (MARIAH)Mariah was diagnosed with Atypical Teratoid Rhabdoid Tumors at the tender age of 7 weeks old on May 9th,2019. ATRT is a primary central nervous system tumor. This means that it begins in the brain or spinal cord. These tumors are classified as Grade IV tumors which signifies that they are malignant and fast-growing. They normally appear very large with fluid-filled areas that often brightens with contrast. You can often see areas of bleeding or dead tissue. ATRTs develop from several different very young cells called embryonal cells. These cells include rhabdoid, neuroepithelial, epithelial and mesenchymal. Symptoms related to an ATRT depend on the tumor’s location and the person’s age but can consist of morning headaches, vomiting, loss of balance and increase in head size in infants. The 5-year survival rate of these tumors is 32.2%. Mariah began having blood in her stools and then we noticed that her liver was protruding. We immediately took her to be seen by a doctor. Once the results of the tests came back, we were given the gut-wrenching news that she had cancer. As a parent you can never prepare yourself to hear those words. I asked myself several times how this could even be happening. Stage IV tumors meant that she was in the fight for her life and we were terrified because we knew she really did not have a very good chance at beating this. Knowing there was nothing we could do for our daughter was heart breaking. Prayer was ultimately all we had. Watching what treatments alone did to Mariah was nothing I would ever wish upon anyone. These medicines are meant for adults and our baby was only 7 weeks old. She had to have her right kidney removed as well as 15 lymph nodes. Her tiny body endured so much. She was so brave and fought so hard. She gave my husband and I strength when we had very little left. Mariah lost her battle on June 29th, 2020. Not a day goes by that we do not think of her and miss her terribly. Both my husband and I are very passionate about spreading awareness and educating others about childhood cancer. Too many children are dying because of cancer and something has to be done to change this. This year in the United States, an estimated 10,470 children younger than 15 and about 5,480 teens age 15 to 19 will be diagnosed with cancer. After accidents, cancer remains the second leading cause of death in children under age 15. It is estimated that 1,050 deaths from cancer will occur in the United States this year in children younger than 15. Those that survive the five-year survival rate have an eight times greater mortality rate due to the increased risk of liver and heart disease and increased risk for reoccurrence of the original cancer or secondary cancer. According to the National Cancer Institute, there has been a substantial increase in childhood cancers over the past few decades. In fact, the overall rate has increased 27 percent since 1975 in children under the age of 19. Cancer does not discriminate nor does it care who it wipes out. Cancer affects all of us regardless of who you are. It has caused both my husband and I extreme anxiety and boughts of depression. Mariah’s sisters miss her very much and it is hard for them to completely understand her being gone. Losing a child to this destructive ugly disease is the worst pain imaginable. This is why it is crucial that the 4% funding for childhood cancer research rise to 8%. More needs to be done so that less children are having to fight for their lives and endure such horrific treatments like chemotherapy and radiation. Sadly, right now there are no other options. We can never get our precious Mariah back but we can do all we can to stand up and be heard for all those children who never were given that chance. The federal government is allocating a measly 4% for federal funding for childhood cancer research. This is not nearly enough funding to make a difference. By signing this petition, you will help facilitate lobbying and the advance of a healthcare policy that will reserve a higher percentage of resources for childhood cancer research. With increased funding, a vaccine could potentially be found that could end the use of chemotherapy for treatments in children. A cure could even be found to end childhood cancer forever. We need 12 million signatures to take the next step in this process. Please sign and share this petition and stand with us to make a change happen.JACKSON, OHIOSuzanne Norden2698/16/22- John JoyceINCREASE FEDERAL FUNDING FOR CHILDHOOD CANCER RESEARCH FROM 4% TO 8% (ADLEY)Just 2 weeks shy of her second birthday, Adley Gordon was diagnosed with B-cell Acute Lymphoblastic Leukemia. B-cell ALL is a cancer that effects your B lymphocytes (white blood cells) that grow in the soft center of your bones, called marrow. B lymphocytes are supposed to grow into cells that fight off infections. However, in this disease, they turn into leukemia cells that live longer than normal cells and reproduce quickly. They build up in your bone marrow and move into your bloodstream. From there they can advance to other organs in your body. Symptoms depend upon the number of leukemia cells you have. But the most common symptoms include loss of appetite, fever, fatigue and night sweats. The 5-year survival rate of this specific cancer is 89% for children under the age of 20 years old.For roughly 3 days straight, Adley began showing signs that she was not feeling well. She was extremely lethargic and she did not want to walk. She was also very pale and her complexion was off. We immediately took her to see the doctor and on February 10th, 2022 she was diagnosed with cancer. We were shocked and never thought we would hear someone tell us that our child had cancer. Although the news was terrifying, we were determined that Adley was going to beat this ugly disease. It has been very difficult watching our sweet daughter suffer through her treatments knowing there is nothing we can do other than pray for her. She has already had to undergo 3 bone marrow biopsies as well as 6 or 7 spinal taps. Soon she will be starting the delayed intensification treatments. She is on a 2.5-year treatment plan and we are on day 150. Pediatric cancer is a worldwide problem. Every two minutes a family and their child are told of a cancer diagnosis. Cancer is the number one cause of disease related death in children under the age of 15 in the United States. According to the NCI, there has been a substantial increase in childhood cancers over the past few decades. In fact, the overall rate has increased 27% since 1975 in kids under the age of 19. Approximately 10,470 children in the United States under the age of 15 will be diagnosed with cancer in 2022. Each year, an estimated 400,000 children and adolescents worldwide are diagnosed with cancer. Every three minutes, a child with cancer dies. Survival often comes at a price. Despite advances in childhood cancer research, over 75% of children who survive cancer live with permanent side effects, some of which may include deafness, blindness, motor impairments, growth issues, organ failure, cognitive difficulties, fertility issues, psychological, neurological and endocrine disorders. Although advances in research have somewhat improved the chances of survival, many children still die from the disease. High-risk cancers still continue to have relatively low survival rates, between 7 and 31%. This is why it is crucial that we see the 4% federal funding for childhood cancer research rise to 8%. Our children deserve a fighting chance and at such a low percentage of federal funding that cannot happen quickly enough. Adley is such a strong-willed little girl. She amazes us daily at how well she is handling such a horrific disease. She is by far the bravest little warrior we know. She may get knocked down by treatments but she gets right back up to continue pushing herself forward. She gives my wife, her brother and myself the strength we often need. We know she will overcome this, but the fear of the unknown still lingers in our minds as much as we try to push it away. There is always the terror of relapse or long-term affects due to her treatments. Cancer does not discriminate nor does it care who it tries to destroy. It can come back with a vengeance and that alone is terrifying to think about. There is also the stress of having to travel to her treatments twice a week. The travel alone is 80 miles each way. But just like in treatments, there is no other option. The federal government is allocating a mere 4% for federal funding for childhood cancer research. This is not nearly enough to make a difference. By signing this petition, you will help facilitate lobbying and the advance of a healthcare policy that will designate a higher percentage of resources for childhood cancer research. Essentially this will give researchers more funding to do more testing and potentially find a childhood cancer vaccine. This would help decrease the time these children would have to fight as well as less suffering due to treatments. We are in need of 12 million signatures to advance to the next step in this process. Please stand with us by signing and sharing this petition so these children and families can be heard.GREEN CASTLE, PENNSYLVANIASuzanne Norden1,8788/16/22
C. A. Dutch RuppersbergerIncrease federal funding for childhood cancer research from 4% to 8% (Andrew)ANDREW’S FIGHT Andrew Mercier was diagnosed with Acute lymphoblastic leukemia at the age of 9 years old. ALL is a type of cancer of the blood and bone marrow that affects white blood cells. It is the most common childhood cancer. It arises when a bone marrow cell develops errors in its DNA. This type of cancer often progresses quickly and if left untreated, it would likely be fatal within a few months. Symptoms can include enlarged lymph nodes, bruising, fever, bone pain, and frequent infections. The 5-year survival rate for ALL is 68.8%. Andrew began feeling exhausted after school each day. He often complained of leg pain. At first, we thought this was due to growing pains. When the pain continued, we took Andrew to see his doctor. We were told our son had the flu and were sent home. As the pain progressed, we took him back to the doctor a second time. This time we were told Andrew had strep throat and were once again sent home. We knew at this point after he continued feeling pain in his legs and feeling fatigued daily that this was not just the flu bug. We took him back to see the doctor and blood tests were finally done. On Easter Sunday, 2 days before his 10th birthday, our world shattered. The tests came back and showed that he had leukemia. We could not believe what we were hearing. I tried convincing myself that this was just a bad dream, but it was our new reality. It crushed our son’s spirit as we had to cancel his birthday party. I will never forget the look on my son's face when he knew he would be spending his special day going through chemotherapy treatments. These treatments were extremely hard on our son. The side effects are often as bad if not worse than the cancer itself. He was constantly sick laying in a hospital bed. It was torture not being able to take away our sweet boys’ pain or fear. He went through 8 months of chemotherapy and each treatment was worse than the last. As each month passed by and he did not improve, Andrew knew he was going to die. As a parent there is absolutely nothing more painful than knowing you would soon be planning your child’s funeral. My husband and I watched our son die. Our son watched himself fade away. To this day we are still struggling to process this loss. Andrew was always so full of life. He loved being around his friends and was such a happy child. Cancer destroyed the future our son was supposed to have. We will forever grieve our loss but are determined to be his voice for him. There are too many families in our position and we deserve to be heard. About 10,470 children in the United States will be diagnosed with childhood cancer. 1 out of 6 children with cancer in America do not survive five years. Despite advances in medicine, some types of cancer remain incurable. As of 2020, there have only been six new drugs developed for childhood cancer. 1 in 285 children will be diagnosed with cancer before their 20th birthday. Globally, roughly 400,000 children are diagnosed with cancer each year. 44% of childhood cancer cases worldwide are never diagnosed. Roughly 1,050 children under the age of 15 are expected to die from cancer in 2022. There are far too many children having to go through this and too many families losing their children due to cancer. It is so important that we do all we can to see the 4% federal funding for childhood cancer research rise to 8%. My husband and I now run a nonprofit organization called Andrew's Laughing Gas in memory of our son. As Andrew fought Leukemia, one thing that brought him the most joy and laughs was his remote-controlled farting machine. Andrew was a jokester and loved to hear the sounds that machine made and enjoyed everyone's reaction when he would play it. We knew we wanted to give back to children still fighting this horrific disease. Along with a great group of people, we construct stuffed animals that have a farting machine inside and gift them to children fighting childhood cancer so that they too can get some joy in such a dark time in their lives. We know Andrew would want us to do this and carry on his legacy. The federal government at this time is allocating a mere 4% for funding for childhood cancer research. This is not enough funding to make a difference. By signing this petition, you will be helping facilitate lobbying and the advance of a healthcare policy that will designate a higher percentage of resources for childhood cancer research. We need 12 million signatures in order to take the next step in this process. Help us to be the voice of those who no longer have one and for those still fighting. Please sign and share this petition and help make a difference for children all over the world.DENISE POLLEY6238/15/22
Bob GibbsINCREASE FEDERAL FUNDING FOR CHILDHOOD CANCER RESEARCH FROM 4% TO 8% (TAYA)Taya Soto was diagnosed on October 18th,2021 with B-cell acute lymphoblastic leukemia. B-cell ALL is the most common form of cancer found in children. This type of cancer is fast-spreading. It is a type of leukemia that causes you to have immature white blood cells, known as B-cell lymphoblasts, in your bloodstream and bone marrow. From there they can spread to other organs in your body. Sometimes a child with this specific kind of cancer shows no symptoms or has normal blood work even a few weeks or months before the diagnosis. The risk for development is highest in children younger than 5 years of age. The 5-year relative survival rate for B-cell ALL is 68.8%. Taya was a sweet little girl with the biggest and most beautiful brown eyes. She brought so much joy to our lives. She started experiencing high fevers in September and did not seem to be feeling herself. We took her to the emergency room and we were quickly directed to the Children’s hospital in Madera, CA for her to be seen there. Blood work was immediately done but when the tests came back, they found nothing. We were then sent back home with no answers other than the doctors thinking it could be leukemia. Imagine the fear we felt and not having any answers was even worse. Within a few weeks she began feeling sick again and developed a fever. We took her back to the children's hospital immediately and more blood work was done. When the tests came back, doctors found leukemia in her blood. She was immediately admitted to the hospital and began chemotherapy. On October 27th, 2021 we celebrated Taya’s 2nd birthday in the hospital. We tried the best we could to make it a happy day to celebrate her. In true Taya fashion we had cake, balloons and presents galore. She was able to smile even though she was not feeling well. That was the warrior in our sweet daughter. Three days later on October 30th she was not feeling well and as her father, I wanted to comfort her. I picked her up and held her in my arms. As I watched her, she closed her big brown eyes but did not wake back up. The doctors did all they could to revive her but her pulse continued to fade until she was gone. My precious Taya slipped away in my arms and I cannot and will not ever forget that feeling of such emptiness. We are forever broken and knew right then our lives would never be the same without her here with us. We ache for her, for her brother and for ourselves. Cancer robbed us of so much but cancer does not care. It took our beautiful daughter from us and it is robbing so many other families of the same. Every year in the United States there are an estimated 15,780 children between the ages of birth and 19 years of age who are diagnosed with cancer. On average, about 16% of children die within 5 years of diagnosis. Among those children who survive to five years from diagnosis, 18% of them will die within the 25 years. Childhood cancer are killing more children in America than any other disease. Some cancers are still functionally incurable. Even with a more “curable” diagnosis, too many children in the U.S. do not have access to the medical care they need. Without proper treatment, cancer is essentially the same death sentence that it was before modern medicine. It is for that reason we need to find a cure and why I am so passionate about doing all I can to help spread awareness about this vicious disease. At this time, the federal government is only allocating a mere 4% for funding for childhood cancer awareness. Clearly this is not nearly enough. The percentage needs to be increased to 8% for proper research. The signing of this petition will help facilitate the lobbying and passing of a healthcare policy or law that grants a higher percentage of national resources to childhood cancer research. This will allow researchers more funding to be able to do more studies and possibly find better treatments or even a childhood cancer vaccine. We are in need of 12 million signatures so that we can begin lobbying to raise that percentage to 8%. It takes a village and we need your help. These children along with their families deserve to be heard. Please join us by signing and sharing this petition.POTORVILLE, CALIFORNIASuzanne Hartnett-Norden3608/15/22
Mike ThompsonIncrease Federal Funding for Childhood Cancer Research from 4% to 8% (Brooklynn Evans)Being a single parent comes with many tasks. Caring for children full time while working 40 hours a week, making sure you are able to provide for them. Everything works out well, until something happens out of nowhere and turns your world completely upside down. This is what happened to me the day that my daughter was diagnosed with cancer. On July 14, 2015, Brooklynn was diagnosed with an extremely rare type of cancer at the tender age of 5. This type of cancer is called Diffuse midline glioma with Foci Pleomorphic Xanthoastrocytoma with Acute Intracranial Hemorrhage. Diffuse Midline Gliomas are primary central nervous system tumors. Meaning, they begin in the brain or spinal cord. It is a rare subtype of Glial Tumors. To get an accurate diagnosis, a piece of tumor tissue is typically removed during surgery. Unfortunately, Brooklyns type of cancer is much more rare due to the accompanying diagnosis of Foci Pleomorphic Xanthoastrocytoma with Acute Intracranial Hemorrhage. Only 7 other kids in the United States have been diagnosed with this specific mutation. Brooklynn’s fight has been perilous since the start. There have been many ups and downs, along with so many unanswered questions, due to the rarity of the type of cancer she has. Sometimes I struggle to accept that this is our reality now. If I had been taken seriously from the start, this could have been prevented. Although my daughter has overcome so much, it is not without emotional and mental distress. Brooklynn suffers from anxiety and severe memory loss. She was also diagnosed with Intellectual Disability, but that does not stop her from fighting every day to lead a normal life. Research from the National Cancer Institute on statistical data about childhood cancer, paints a gruesome picture of how childhood cancer is the leading cause of death by disease past infancy among children in the United States. It has been formally estimated in 2022 that over 15,600 children will be diagnosed with childhood cancer, and 1,780 will die of the disease in the United States. Further, brain cancers are the second most common form of childhood cancer, accounting for over 20% of all cases. Further research shows that the Government has allocated a baffling 4% funding for childhood cancer research. We need this percentage raised to at least 8% to ensure more consistent research for childhood cancer. One of the many reasons I am so passionate about finding a cure for childhood cancer, is that I do not want another family’s lives to be altered the way our lives have been since Brooklynn’s diagnosis. These kids are being robbed of their childhood. Instead of playing on a playground or going to school, they are fighting for their lives. I appreciate facilities like UCSF Benioff Children's Hospital Oakland for having the right people in place to help these children. But my daughter went through chemo and radiation five days a week. These treatments leave you immunocompromised and cause side effects that last most, if not all of your life. Research shows that these treatments being administered to our children have not been updated since the 70’s. It is time to change that. By signing this petition, you will be standing with us in the fight to raise the federal funding for childhood cancer research from 4% to 8%. This will be extremely beneficial for children battling cancer. Right now there is only one month of the year dedicated to this research. The extra funding will ensure more consistent research to aid in finding a cure for childhood cancer year round. Please click the link to sign. One free minute of your time could make a world of difference in a sick child's life.Brittni Gillespie1418/14/22
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