The sickle-shaped cells are not flexible and cannot change shape easily. If you get one, you might need to go to the hospital for treatment. Headquartered in Falls Church, VA, Big Red M is an entrepreneurial company focused on becoming the nations #1 association business GBT and Advocates Launch Disease Awareness Campaign Focused on Breaking Down Stigmas Associated with Sickle Cell Disease. "We know that sickle cell can touch so many aspects of your life and we want the resources that you need to be only a phone call away. These cookies may also be used for advertising purposes by these third parties. She named him Rickey. This medicine is not right for everyone; talk to your health care provider about whether you should take it. My mother is from the Dominican Republic, and my father is from Puerto Rico. The cells are supposed to be disc-shaped, but this changes them into a crescent, or sickle, shape. Session 3: Lisa Leung-Tat leads a meditation for sickle cell patients and explains how silence and stillness in body and mind can create space in the mind which leads to clarity. After more than twenty years, Questia is discontinuing operations as of Monday, December 21, 2020. We are deeply committed to you and want to advocate for you within the healthcare system. Mass General provides comprehensive primary care and medical specialty services. It is very important that every person or family with a child with sickle cell disease has a plan for how to get help immediately, at any hour, if theres a problem. Miss Manners: She screamed at us for going ahead of her in line. Tasha Hines is 39 years old, married, and a registered nurse at an internal medicine outpatient clinic. If both parents have hemoglobin S trait, there is a one-in-four chance with each pregnancy the child will have SS disease. Contact us or find a patient care location. Because these transplants are risky and can have serious side effects, they are usually only used in children with severe SCD. Read more about how The Vertex Foundation's gift will help the Center establish a dedicated athletic training program and a first-of-its-kind survivorship program. These cookies may also be used for advertising purposes by these third parties. Sickle cell disease can cause progressive organ damage throughout the body, including the lungs, kidneys, and joints. We are vaccinating all eligible patients. The only cure for SCD is bone marrow or stem cell transplantation. Such challenges are sadly exacerbated further by the reality of the discrimination and indifference that exists in our health care system. WebSickle cell disease is an inherited blood disorder affecting red blood cells. Learn about the many ways you can get involved and support Mass General. We have the abundant resources of a general hospital to care for you and to help you manage your disease and its symptoms. Greater Boston Sickle Cell Disease Assoc. Please see their website at:http://www.scinfo.org, The National Heart, Lung, and Blood Institute of the National Institutes of Health is one of the federal organizations that oversees research related to sickle cell disease. For the transplant to work, the bone marrow must be a close match. And when will it stop? Hydroxyurea, a medicine that has been shown to reduce or prevent several SCD complications. Sickle cell disease is an inherited blood disorder affecting red blood cells. Dear Abby: I have a new wife and a friend I sleep with. Regina Hartfield is president and CEO of the Sickle Cell Disease Association of America. The most common form of SCD found in North America is homozygous HbS disease (HbSS), an autosomal recessive disorder first described by Herrick in 1910. With support from The Vertex Foundation, the Mass General Comprehensive Sickle Cell Disease Treatment Center will expand its innovative, multidisciplinary approach to treating a disease that historically has not received the attention it deserves. While outcomes for individuals with SCD are worse than their peers, the available evidence demonstrates that poor outcomes are very often not the result of the disease but attributable to challenges in our health care system exacerbated by anemic federal policy. Miss Manners: Am I supposed to be charmed by a baby destroying a cake? Many of them burst apart as they move through your blood vessels. My name is Nilda Maria Navedo, and I am 44 years young. This year, we were pleased to announce our partnership with the Sickle Cell in Focus (SCiF) Conference, hosted by the National Heart, Lung, and Blood Institute. See our criteria for Questia. Food for thought: If you eat and when you eat can impact your mortality . Where can I find additional resources about sickle cell disease? These cookies perform functions like remembering presentation options or choices and, in some cases, delivery of web content that based on self-identified area of interests. Prompt diagnosis and treatment initiation is critical to prevent kidney disease progression. Quenton Buckhalter, a carrier of sickle cell traits, says he lost his mom to the disease. Mass General Hospital The disease is most commonly seen in the black and brown population where the gene frequency for sickle hemoglobin (HbS) is 4%. Get the latest news, explore events and connect with Mass General. Looking to learn more about sickle cell this month? How can I prevent complications of sickle cell disease? What you should know about sickle cell trait. If you have SCD, there is a problem with your hemoglobin. 02114. These awards recognize DOM members who have exemplified the Department's commitment to equity by going above and beyond to: combat bias or discrimination; respond to the social needs of patients or promote equity for patients or coworkers on the basis of race, ethnicity, sexual orientation, gender identity, age, disability, religion, or national origin. Is a Widely Available Cure for Sickle Cell Disease on the Horizon? Copyright 2021 Sickle Cell Disease Association of America, Inc - All rights reserved. Cookies used to enable you to share pages and content that you find interesting on CDC.gov through third party social networking and other websites. Mass General has received a revolutionary gift of $50 million from Robert K. Kraft and The Kraft Family Foundation to address healthcare disparities caused by race, ethnicity, geography, and economic status. We might permanently block any user who abuses these conditions. In our effort to learn from and partner with the sickle cell disease community in Boston, we partner with the Greater Boston Sickle Cell Disease Association and the New England Sickle Cell Consortium. Some patients may receive antibiotics to prevent infections. WebAOL latest headlines, entertainment, sports, articles for business, health and world news. Sickle cell disease and anemiaa person who inherits two abnormal gene copies (alleles), one of which is a Hb S gene, has sickle cell disease (i.e., a person who has one Hb S gene copy and one Hb C gene copy has sickle cell disease.) These cookies perform functions like remembering presentation options or choices and, in some cases, delivery of web content that based on self-identified area of interests. When Im in that moment of pain in the emergency room, I cant even think for myself. Get the latest news on COVID-19, the vaccine and care at Mass General. A regional cooperative group of New England Pediatric Hematology programs devoted to SCD. Individuals and organizations can join our efforts to bring attention to sickle cell disease by engaging elected officials for proclamations, hosting awareness events, distributing educational information to dispel the myths about sickle cell disease, and lighting public spaces, buildings and landmarks red! They help us to know which pages are the most and least popular and see how visitors move around the site. Safe Care CommitmentGet the latest news on COVID-19, the vaccine and care at Mass General.Learn more. Did you know that blood transfusions are one of the most critical treatments for sickle cell patients, but less than 10% of Americans donate blood? SCDC National Sickle Cell Awareness Month 2022 Archive, oneSCDvoice Sickle Cell Awareness Month Resources, Midterm Election Outcomes and What they Mean for SCD, NFL players spotlight Sickle Cell Disease Association of America, Frequently Asked Questions about SCT in Newborn Screening, September 21: Mental Health & Sickle Cell, September 23: Pharma Initiatives & Advances in Finding a Universal Cure. You are the most important member of the medical team and youll be joined by our group of experts to develop and coordinate a comprehensive treatment plan for you. Linking to a non-federal website does not constitute an endorsement by CDC or any of its employees of the sponsors or the information and products presented on the website. She has exemplified a passion for helping address the social needs of the patients she serves including helping patients navigate issues of transportation and food insecurity. These patient warriors have waited long enough for the help they need and deserve. WebNovel Coronavirus Information Center. Attention to the physical, psychosocial, and financial impacts of the disease are key to providing good care for patients and their families. Read the Presidents Proclamation here. These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. Check out some of our 2022 events and initiatives below! Linking to a non-federal website does not constitute an endorsement by CDC or any of its employees of the sponsors or the information and products presented on the website. Read his story. We work with our colleagues at other sickle cell programs throughout the commonwealth and transition pediatric patients from bothMass General for Children and Boston Childrens Hospital. WebMoyamoya disease is a disease in which certain arteries in the brain are constricted. This is a condition called anemia, and it can make you feel tired. Learn more about the American Heart Association's efforts to reduce death caused by heart disease and stroke. Session 1: Lisa Leung-Tat provides a brief guided session giving sickle cell patients clear instructions for body-mind awareness using the breath as an anchor. 55 Fruit Street Session 2: Lisa Leung-Tat guides a meditation for sickle cell patients focused on further exploring practice by deepening the breath and using the rhythm of the breath to calm the mind. Dr. Alvarez directs the Universitys Sickle Cell Program and leads the Newborn Screening Program forhemoglobinopathiesin Miami-Dade and Monroe Counties in Florida. There are several different types of sickle cell disease; the most common types are homozygous sickle cell disease (SS disease), and sickle-cell beta thalassemia (S+ or S0 disease). Dr. Sharl Azar, Director of the Comprehensive Sickle Cell Disease Treatment Center at Mass General Hospital, spoke with Dr. Mallika Marshall at WBZ Boston about the importance of getting blood donations from Black Americans. Get news from Sickle Cell Disease Association of America in your inbox. When both parents havesickle cell trait (SCT), there is a 1 in 4 chance that each of their children will havesickle cell disease (SCD). "I learned the most about medicine from my dads death". View our Awareness Month Flyer & Facts Sheet. Visit our social media pages on Fridays for a sickle cell-themed trivia question. Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov. Ellen Silvius is the dedicated Nurse Navigator for the Comprehensive Sickle Cell Disease Treatment Center, and she is the primary point of contact for all of our patients. WebCell-based Assay Market to hit USD 32.23 Billion, Globally by 2030 at 8.2% CAGR: Polaris Market Research - 38 mins ago. WebSickle Cell Disease Association of America, Inc. (SCDAA) and The Pain Community are proud to announce a new partnership that will Read more . The toolkit is a collection of resources to increase understanding of sickle cell trait. Important facts about sickle cell disease. We want to be your advocates. When AJ was born in 1992, there was a real lack of information and education about newborn screening and sickle cell disease, I am the oldest of three children and the only one with sickle cell trait. When I think about my patients living with sickle cell disease, they are going to be needing blood transfusions repeatedly over the course of their lifetime. Sickle cell runs in my family, my mother passed away from it in 2017. Cookies used to enable you to share pages and content that you find interesting on CDC.gov through third party social networking and other websites. A systematic review of pertinent original research publications, reviews, and editorials was undertaken using MEDLlNE, the Cochrane Library databases, and CINAHL from 1947 to November 2010. The biggest obstacle individuals with SCD face may not be their disease, but rather inaction by our elected leaders. For Fatimahs mother and father, who both have SCT, their first daughter (Fatimahs older sister) was born with SCD; 7 years later, Fatimah was also born with SCD. The Centers for Disease Control and Prevention (CDC) cannot attest to the accuracy of a non-federal website. We have remained at the forefront of medicine by fostering a culture of collaboration, pushing the boundaries of medical research, educating the brightest medical minds and maintaining an unwavering commitment to the diverse communities we serve. Kate is the dedicated social worker for the Sickle Cell Disease program. Enter the last name, specialty or keyword for your search below. Cookies used to make website functionality more relevant to you. In September 2012, Lametra Scott gave birth to a baby boy. These episodes can be as short as a few hours in length, or they may last for days on end. Sickle cell disease (SCD) is a group of inherited red blood cell disorders. I didnt want to end up in the hospital and miss class, said Mikeia Green about her experience managingsickle cell disease (SCD)in college. Here are some gneeral ideas that may help: More specific recommendations to reduce the number of sickle cell crises an affected person may experience include taking the following precautions: The Sickle Cell Association of America advocates for the needs of persons with sickle cell disease. Join the Public Health Webinar Series on Blood Disorders. Sickle cell disease (SCD) and its variants are genetic disorders resulting from the presence of a mutated form of hemoglobin, hemoglobin S (HbS) (see the image below). In the U.S., African-Americans are most likely to have the disease, though it is found among many different racial and ethnic groups, including whites, Hispanics, Native Americans, and Southeast Asians. Please see their website for more information:http://www.sicklecelldisease.org, The Sickle Cell Information Center based in Atlanta, Georgia provides a wealth of news, information, and links to resources about sickle cell disease. SCDAAs 2022 theme is Sickle Cell Matters 2022. In a powerful piece paying tribute to his father, Gleeson Rebello, MD, pediatric orthopaedic surgeon and Sickle Cell Disease Treatment Center team member, shares lessons that his fathers death taught him about the medical field and how personal loss has made him a more thoughtful physician. National Health Observances (NHOs) are special days, weeks, or months dedicated to raising awareness about important health topics. Session 4: Lisa Leung-Tat leads a meditation for sickle cell patients which focuses on deepening the breath practice. You will find [] In the United States, most of the people with SCD are African Americans: SCD also affects some people who come from Hispanic, southern European, Middle Eastern, or Asian Indian backgrounds. Living with sickle cell can be challenging and unpredictable, but I believe it makes us some of the strongest people on earth. Make a guess and learn something new every week this month! She enjoys being an advocate to her patients, a trusted support, and an empathetic ear. Sickle Cell Disease Association of America Learn More; National Heart, Lung and Blood Institute: Phillip Okwo is a former summer camp counselor atCamp Crescent Moon, a week-long sleep away camp for children with sickle cell disease in Pacific Palisades, CA. Sickle cell disease (SCD) is a group of inherited red blood cell disorders. At Mass General, we have the abundant resources to care for you and to help you manage your disease and its symptoms. Saving Lives, Protecting People, Sickle Cell Disease in California (for Providers), Sickle Cell Disease in Georgia (for Providers), Sickle Cell Disease in North Carolina (for Providers), Sickle Cell Disease in New York (for Providers), National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Flu Vaccine for People with Sickle Cell Disease, U.S. Department of Health & Human Services. Dr. Brett Giroir is a pediatrician and former assistant secretary of health at the U.S. Department of Health and Human Services. Tristan, along with being a professional model, actor, and independent fashion designer, is a professional patient advocate for the Sickle Cell Disease Association of America (SCDAA), the Sickle Cell Pennsylvania Sickle Cell Council, and Sick Cells. This is not a matter of science or technology it is only a matter of national will. Boston, All rights reserved. But there is so much more that needs to be done. Most of the signs and symptoms of SCD are related to complications of the disease. Bay State Banner: Be Healthy Winter 2022 Edition. to analyze our web traffic. To stay as healthy as possible, make sure that you get regular medical care, live a healthy lifestyle, and avoid situations that may set off a pain crisis. The pain is debilitating and theyre asking me questions like, Are you sure you have sickle cell? The primary NIH organization for research on, MedlinePlus links to health information from the National Institutes of Health and other federal government agencies. Learn more. The best defense is to take simple steps to help prevent infections. Overall, it is estimated that approximately 100,000 persons in the U.S.are living with sickle cell disease. We have a dedicated sickle cell disease chaplain for spiritual care and if you need to be admitted to the hospital, our unique partnership with palliative care allows us to holistically treat your pain and symptoms. Sharon takes great pride in her role as a Nurse Navigator for the Sickle Cell program, and is honored to serve as advocate, caregiver and ally to her patients. Centers for Disease Control and Prevention. If you have SCD, there is a problem with your hemoglobin. We take your privacy seriously. We invite you to join us for a virtual blood drive to support sickle cell warriors! See our, URL of this page: https://medlineplus.gov/sicklecelldisease.html, Also called: Hemoglobin SS disease, Sickle cell anemia, (Centers for Disease Control and Prevention), (National Heart, Lung, and Blood Institute), (National Institute of Diabetes and Digestive and Kidney Diseases), (National Human Genome Research Institute), References and abstracts from MEDLINE/PubMed (National Library of Medicine), (March of Dimes Birth Defects Foundation), Bone Marrow Transplantation: MedlinePlus Health Topic, Sickle Cell Disease and Pulmonary Hypertension, Prenatal Genetic Counseling (For Parents), Sickle cell disease: MedlinePlus Genetics, Battling Bent Blood Cells: Progress in Sickle Cell Disease, NIH Launches New Collaboration to Develop Gene-Based Cures for Sickle Cell Disease and HIV on Global Scale, NIH Researchers Create New Viral Vector for Improved Gene Therapy in Sickle Cell Disease. We need Congress and the administration to pick up the playbook of policies outlined by the National Academies of Sciences, Engineering and Medicine in their landmark 2020 report on SCD. Sickle cell disease can affect persons of any racial or ethnic background. We offer diagnostic and treatment options for common and complex medical conditions. See their website for news, education, and other information about the disease:http://www.nhlbi.nih.gov/new/sicklecell.htm. Passing the three acts pending in Congress would be a strong start to addressing SCD. We take your privacy seriously. The toolkit is a collection of materials that can be used to help people living with sickle cell disease (SCD) to manage their health and keep track of important information regarding medical care and treatment. At Mass General, the brightest minds in medicine collaborate on behalf of our patients to bridge innovation science with state-of-the-art clinical medicine. Jen Miramontes, Personal Trainer and Medical Exercise Specialist, provides personalized fitness programs specific to our participating patients with SCD. Dates and themes are below (all events will be held between 12:30 and 1:30 p.m. EST): SCDAA member organizations across the country are hosting events to bring our community together. For years, Congress and presidential administrations have failed to adequately address SCD. We apologize for any inconvenience and are here to help you find similar resources. Sickle Cell Disease (SCD) is an inherited blood disorder that primarily impacts Black Americans, followed by Latino Americans and, to a lesser extent, white Americans. These pain episodes can affect any part of the body. The hallmark symptoms of the disease, however, are the episodes of severe acute pain, called vaso-occlusive crises (or sickle cell crises), that the individual can experience. Why would I want a primary care physician? People with the disease are born with two sickle cell genes, one from each parent. Some people with sickle cell disease may develop neurocognitive deficits. Now through the end of December, when you use Baylor-branded gas pumps at participating Chevron stations, 5 cents of every gallon purchased benefits Baylors research that leads to better patient care. If you need to go back and make any changes, you can always do so by going to our Privacy Policy page. September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of sickle cell disease. If you are born with one sickle cell gene, it's called sickle cell trait. Despite progress, this reality has for far too long contributed to historic inequities in research, funding and the attention of the policy community. We encourage everyone to be a part of this annual effort to increase awareness about sickle cell disease and sickle cell trait during the month of September. We understand the complexities of sickle cell disease and our comprehensive team has the experience to care for you and your family. A Look Back: Major blackout hits New York City on July 13, 1977 On July 13, 1977, 45 years ago Wednesday, a major blackout hit New York City. Our team is adept at the management of adults with sickle cell disease and are readily available to help you transition from pediatric to adult care. WebIf one parent has Sickle Cell Anemia (SS) and the other has Sickle Cell Trait (AS), there is a 50% chance (or 1 out of 2) of having a baby with either sickle cell disease or sickle cell trait with each pregnancy. We would like to show you a description here but the site wont allow us. Notice of Privacy Practices(Patients & Health Plan Members). WebText to 44202 (Msg&Data Rates May Apply). With new therapies on the horizon, we have good reason to be hopeful about the future. View our Awareness Month Flyer & Facts Sheet. Working with policymakers, we can eventually reach a day where SCD receives the attention it needs. Cookies used to make website functionality more relevant to you. When this happens, oxygen can't reach nearby tissues. What is sickle cell disease (SCD)? With SCD, the hemoglobin forms into stiff rods within the red blood cells. It is an inherited condition (one that you are born with). These red blood cells become sickle-shaped (crescent-shaped), and have difficulty passing through small blood vessels. All states now test newborns as part of their screening programs, so treatment can begin early. People with SCD start to have signs of the disease during the first year of life, usually around 5 months of age. Some federal policies are outdated and need to be modernized, others need to be better resourced, and in some cases, the federal government lacks needed policies for Medicaid and public health. As a result, individuals access to care varies significantly based on the state in which they live. WebRead latest breaking news, updates, and headlines. Supporting Innovation for People With Sickle Cell Disease. Lance Jasper Jones is 31 years old, is engaged to be married, is in graduate school pursuing a masters degree in clinical psychology, and is a talented musician and music producer. Download our Social WebAbout Sickle Cell Disease Association of America, Inc. What SCDAA does: * Provide leadership on a national level to create awareness of the negative impact of sickle cell disease on the health, economic, social and educational well-being of the individual and his or her family and to create awareness of the requirements for resolution. All information these cookies collect is aggregated and therefore anonymous. Dedicated to advocating for & providing support services to patients and families. The Mass General Comprehensive Sickle Cell Disease Treatment Center is proud to be a member of the National Alliance of Sickle Cell Centers (NASCC). Tristan, along with being a professional model, actor, and independent fashion designer, is a professional patient advocate for the Sickle Cell Disease Association of America (SCDAA), the Sickle Cell Pennsylvania Sickle Cell Council, and Sick Cells. When you lose your child, its real. collected, please refer to our Privacy Policy. People will tell you time will heal, but it doesnt really heal. WebHemolytic anemia or haemolytic anaemia is a form of anemia due to hemolysis, the abnormal breakdown of red blood cells (RBCs), either in the blood vessels (intravascular hemolysis) or elsewhere in the human body (extravascular). Get Morning Report and other email newsletters. WebThe risk of chronic kidney disease progression is higher among Black/African American patients, largely due to genetic variants in the APOL1 gene. People with sickle cell disease have red blood cells containing mostly hemoglobin S, an abnormal type of hemoglobin. Sickle cell trait is a carrier condition for. SCDAA supports individuals, families and communities affected by sickle cell disease. Our approach is to create a true medical home where patients and their families can feel seen and heard. The following tips will help you, or someone you know with sickle cell disease, stay as healthy as possible. WebLatest breaking news from New York City. To make sure you're getting enough fluids: Have fluids on hand, both at home and away, You or your child should be vaccinated as recommended by the health care provider, Share the above information with teachers and other caretakers when necessary, Seek emergency medical attention for any temperature of 101.5. WebWere partnering with select Chevron stations in Texas to support pediatric/adolescent brain cancer research. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. People with sickle cell trait are generally healthy, but they can pass the defective gene on to their children. Sickle cell disease can impact many aspects of your health, and we provide patients and their families with a multidisciplinary team of experts who are passionate about providing the best possible care from childhood to adulthood, including a dedicated social worker, a dedicated nurse navigator, infusion space for treatments, the latest treatments, and access to community resources. Nine steps to living well with sickle cell disease in college. Make a gift. Guided Meditation: This guided meditation with Lisa Leung-Tat offers a breath meditation and body scan to help relax tension in the body. There are treatments that can help relieve symptoms, lessen complications, and prolong life: There are other treatments for specific complications. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body. It increases the amount of fetal hemoglobin in the blood. Sickle cell disease is the most common disease detected by newborn screening efforts in the United States, as between 1 out of every 2500 and 1 out of every 2000 babies born in the U.S. has some form of the disease. The first time I learned I carry the sickle cell trait was as a freshman at the University of Georgia, If you would like to share your personal story, please contact us at Contact CDC-INFO, Join the Public Health Webinar Series on Blood Disorders. 'Dragon Storm' set to roar in wicked weekend conditions with snowy Lake Tahoe and rainy Bay Area forecasts, Dear Abby: I'm ready to smack her down, and I need a plan, Ask Amy: I got a big surprise when I looked at their wedding website, Dear Abby: The cook's response to a compliment was deeply hurtful, Gas prices continue to fall, with the national average now less than a year ago, Rogue iguana causes widespread power outage in Florida, Boy in the Box identified as 4-year-old by Philly police after 65 years, Laguna Niguels $70 million Ziggurat auction is wasted opportunity. We have partnered with our colleagues in stem cell therapy to provide expertise in stem cell transplant. Click here to register for the virtual blood drive! Learn why and how to get screened for sickle cell trait. People who are thinking about having children can have the test to find out how likely it is that their children will have SCD. We want to be here for you and your family.". Masks are required inside all of our care facilities. As a result of newborn screening, immunizations, treatment of infections, disease modifying agents like hydroxyurea, and improved supportive care, the survivability has markedly improved over the last ten years. We are committed to providing expert caresafely and effectively. This medicine is not safe during pregnancy. In the United States alone, 4,000-5,000 pregnancies annually result in some variant of sickle cell disease. Article: Risk of vaso-occlusive episodes in patients with sickle cell disease exposed National Heart, Lung, and Blood Institute, Sickle Cell Disease Association of America, Dr. Allison King on Sickle Cell Disease and Learning, Hydroxyurea for People with Sickle Cell Disease, Learn More about Sickle Cell Disease and How It May Affect Your Baby, Transitioning Your Medical Care: Sickle Cell Disease (For Teens), What You Should Know about Sickle Cell Disease and Pregnancy, From Africa to the U.S.: A Young Woman's Search for Sickle Cell Disease Treatment. 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