Call this a million-dollar friendship. Officers, directors, trustees, and key employees, Analyze a variety of pre-calculated financial metrics, Access beautifully interactive analysis and comparison tools, Compare nonprofit financials to similar organizations, Revenue and expense data for the current fiscal year, CEO, Board Chair, and Board of Directors information. I could cure this disease.. A week before our special school event I was like, 'Can I please sell it our school event?'". Only one in a million people have Jonah's condition, said his father, Rabin Pournazarian. Do Not Sell or Share My Personal Information, Copyright 2023 MH Sub I, LLC dba Internet Brands. I love that!'" Here was a kid who was fighting for his life, and a mom who had spent her last 13 years trying to keep him alive. "People told friends, their friends told their friends, their friends told more friends," Dylan says. Sign In or Dr. David Weinstein, Jonah's doctor and a lead GSD researcher, says he almost gave up on his research several times because of a lack of funding. Debra remembers. Back in 2013, Dylan wrote a book called "Chocolate Bar" and dedicated it to Jonah, who has glycogen storage disease (GSD) Type 1b. Rabin Jonah Pournazarian Areas of Law Chapter 13 Bankruptcy Chapter 7 Bankruptcy Debt Settlement Debt Settlement Consumer Protection Write a Client Review Attorney Reviews Client (4) Peer (0) 4.6 /5.0 4 reviews Communication 4.8 Responsiveness 4.5 Quality of Service 4.5 Value for Money 4.5 Bankruptcy Client Review | July 06, 2012 Being Awarded the RARE Champion Award - Advocacy Dylan Siegel / Jonah Pournazarian, "Chocolate Bar Book" Boys Bake sales and lemonade stands were not going to cut it for 6-year-old Dylan Siegel. 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The cover of the richly illustrated, 14-page booklet reads Chocolate Bar by Dylan Siegel and the tone is set in the first entry, which reads, I like to go to Disney Land. He is our life we are really blessed.. "I said, Great! Hed raised more than $5,000, butDylan dreamed bigger. Storrs, CT 06269 to get more GuideStar Nonprofit Profile data today! 86-2260522. I was like, what did he just say? Debra says, laughing. After all, he's already come so far. At this years Back-to-School Night in September, Rabin Pournazarian made an emotional plea to the parents of Jonahs classmates, Snyder recalled. A 47-year-old Texas man was arrested on suspicion of felony vandalism and a hate crime. According to Dylan, going to the beach is chocolate bar. Fox spoke with the woman while Milward went to the front to speak with Tran, who told the officer he was at the station to see someone. Listen on air, online or subscribe to the podcast. He's attending a summer camp in Boston this summer for young innovators and entrepreneurs. He asked the parents to please keep their children at home if they had a routine cold or minor illness, because if transferred to Jonah, they could mean his instant hospitalization. After listening to a very basic description of the disease, Jonah mentioned wistfully that he hoped for a cure for GSD, so that he could get rid of the gastro-intestinal tube he needs to absorb his cornstarch portions. Dylan with the book he wrote to help raise research money for his friend, Jonah. Create Account By entering your email and clicking Sign Up, you're agreeing to let us send you customized marketing messages about us and our advertising partners. Dylan Siegel wanted to help find a cure for an extremely rare condition that affects his best friend, Jonah Pournazarian. He would Dylan Siegel, 7, wrote a book called "Chocolate Bar" last year to raise money for his best friend, 8-year-old Jonah Pournazarian. So two years ago, when Dylan was 6, the California boy wrote a book based around the words he and Jonah use to describe something as awesome as their friendship: chocolate bar. Erika Lantz Twitter Producer, Podcasts & New ProgramsErika Lantz was a producer in WBUR's iLab, where she led the radio series/podcast Kind World. In little more than a year, one small boy has raised more than three-quarters. Your access of/to and use of this site is subject to additional. (Don't see an email in your inbox? (860) 486-2240, "Chocolate Bar" means awesome to Dylan Siegel, the 10-year-old who wrote. Andrea Asuaje Twitter Reporter/Producer, Kind WorldAndrea Asuaje was a reporter and producer in WBURs iLab, where she madeKind World. Do you want to do a lemonade stand? He looked at me like I was insane. The boys 20 classmates have quickly adjusted to the full-time presence of his medical aide, who administers frequent blood tests. . He needs to be fed them very few hours, through a tube in his stomach. Meanwhile, Jonah's parents are grateful their son has such a devoted friend. "Sometimes kids just stare, because they just don't know what its about. Dylan may make thatdifference in the lives of some very sick children, buttheres something else he and Jonah are looking forward to. Dylan became concerned about Jonah when he found out researchers were almost out of funding to conduct studies into the disease, an hereditary liver disorder that means the liver can store sugar but cannot release it, causing dangerously low blood sugar levels that can result in death. The moment has stayedwith Debra ever since. The attorney listings on the site are paid attorney advertisements. 2390 Alumni Drive So two years ago, when Dylan was 6, the California boy wrote a book based around the words he and Jonah use to describe something as awesome as their friendship: chocolate bar.With the help of his parents, Dylan published and sold "Chocola. - FEMA National Flood Insurance Program . Thats right. I can do anything I want. The shooting occurred Aug. 6, 2021, after a woman who was being followed by another driver called 911 and drove to the police station. SendKind Worlda message, find us on Facebookor Twitter, or email kindworld@wbur.org. Enzymes play a crucial part in the process, and when they malfunction, as in GSD, the metabolic process slows or shuts down completely. We live by the clock, said Lora Pournazarian, mother of Jonah and his two healthy siblings twin brother, Eli, and older sister, Rachel, 9. Since then,each medical consultation for Jonah requires a trip to Florida. He was right. Will you go make copies? Can ChatGPT write a Jewish Journal column. Advertise with us (Opens in new window) E-Newspaper Subscribe to the Kind World podcast here- andsend us a messageto share your story of kindness. Its a daunting proposition for anyone, let alone a 6-year-old, and this particular disease posed a major challenge. Both families started getting calls from TV shows, radio stations, newspapers. Since then, the fund has raised $410,000. Want to see how you can enhance your nonprofit research and unlock more insights? International recognition of Artsakhs independence is means to stop mass human rights violations FM Ruben Vardanyan dismissed from the post of Artsakhs Minister of State, UN Court says Baku should ensure free movement along Lachin corridor, rejects Azerbaijans request, Azerbaijan breaches Nagorno Karabakh ceasefire, small arms fire reported in two directions, . . 9629 WENDOVER DRIVE . Dylans mother, Debra Siegel, was driving her son home from Jonahs house when she told him that Jonah had a rare liver diseasehe could die from. What horrible ideas. Column: Uber and Lyfts deactivation policy is dehumanizing and unfair. He set out to do whatever it took to cure his best friend, Jonah Pournazarian, of Glycogen Storage Disease (GSD Type 1b), a rare liver condition. He's now planninghuman trials for GSD gene therapyand sayshis team has found treatments for mice with Jonahs rare type. The next week, Dylan spoke ata PTA meeting. 6 Amazon travel essentials for your next getaway, starting at $12. Paul is a reporter for WUFT News who may be contacted by calling 352-392-6397 or emailing news @wuft.org, Childs Chocolate Bar Book Raises Money for Disease Research, WUFT 89.1 / 90.1 Featured Thank you Gifts. 9629 WENDOVER DR . Dr David Weinstein, who treats Jonah and studies the disease at the University of Florida, thought Dylans desire to help was cute, according toABC News. A GuideStar Pro report containing the following information is available for this organization: This information is only available for subscribers and in Premium reports. Because of Dylans efforts, Jonahs rare disease is receiving its first national attention . Avvo Top Contributor: The Avvo Top Contributor Award is granted to attorneys who have earned significant contribution points in a given year on our sister site, Avvo.com. Jonah Pournazarian is a bright, playful 7-year-old at Stephen S. Wise Temple Elementary School. Haley has the skills and possibly the support base to mount a credible and perhaps competitive underdog campaign. Since then, there has been a second printing of 300 copies, and a third of 500 copies. As every first-time author knows, writing the book was just the beginning, but Dylan kept pushing the project. . A campaign started quietly by a couple of first-graders two years ago to help find a cure for a rare genetic disease passed the $1 million mark in late December, with donations streaming in from . Avvo Clients Choice: The Avvo Client's Choice Award Badge is granted to attorneys with a significant number of 4+ star reviews in a given year. Dylan authored the book Chocolate Bar, which has raised over$400,000 in sales for the Glycogen Storage Disease research program at the University of Floridasince November 2013. "My parents and Jonahs parents worked their butt off," Dylan says. The projects Web site is chocolatebarbook.com. His mother suggested a bake sale, but instead he wrote a book dedicated to Jonah and got his school to make copies. When Jonah Pournazarian was 6 months old, he was diagnosed with Glycogen Storage Disease, a rare liver disease. This episode includes music by Podington Bear, Ben Seretan and Chris Zabriskie. "I suggested that he set up a. Chocolate bar is a phrase Dylan uses frequently, and by which he means awesome.. Touched: The parents of Jonah Pournazarian, Lora and Rabin Pournazarian, Proud parents: Dylan Siegals mother and father Debra and David Siegal, , . NTEE code info. Jonah's GSD1B Research Foundation's mission is to help find a cure for GSD 1b. That fragility motivated Dylan. Back in 2012, inspired by his best friend Jonah Pournazarian, he decided to write a book to help raise funds for research into a rare liver disease that makes sufferers unable to regulate their . Dylans parents, Debra and David Siegel, are also friends of the Pournazarians, and have been actively involved in the Jonah Pournazarian Fund to Support Glycogen Storage Disease 1B research, which Jonahs parents established in 2007. The evening before the Stephen S. Wise Temple Mitzvah Day last Nov. 4,theSiegel and Pournazarian families both worked feverishly to package chocolate bars in colorful wrappers duplicating the books cover. "When we went into the boys room in the ICU, there was a copy of Dylans book on his bed. "At this point, we've treated six people with gene therapy and the response has been beyond anything we ever expected," Dr. Weinstein says. He told ABC 7 that most days, his sons only food is a mixture of cornstarch and chicken soup that he is fed through a tube in his stomach. Echovita is an archive of public obituaries and death notices to keep you informed about people who have passed away in your city This case was filed in Los Angeles County Superior Courts, Spring Street Courthouse located in Los Angeles, California. An independent state panel has redrawn the political maps for the California's congressional districts. Ever, Dr Weinstein told ABC 7. Dylan told the Jewish Journal that he is now planning a second book. Fewer than 100 cases of type 1b have been identified in the United States; some of these cases are in descendants of Sephardi Jews. Jonah's doctor, Dr. David Weinstein, director of the GSD Program at the University of Connecticut's School of Medicine, is leading a team doing breakthrough research on this rare childhood disease that, until 1971, was fatal. That is so Chocolate Bar., Other Chocolate Bar (read: awesome) experiences by the author and illustrator include going to the swimming pool, aquarium, bowling alley and so forth, ending with, I like to help my friends, that is the biggest Chocolate Bar.. That is the biggest chocolate bar, concludes Chocolate Bar. "We are humbled by your love, generosity and support through this remarkable journey and thank you from the depths of our overwhelmed hearts," the boys' parents said in an email sent Tuesday to friends and people who purchased the $20 book or made contributions. He titled it Chocolate Bar, a phrase Dylan says means"awesome." Just us two.". But then Im like, wait. Glycogen is the stored form of glucose, or sugar, which the bodys metabolism breaks down and converts into energy. Jonah's doctor, Dr. David Weinstein, director of the GSD Program at the University of Connecticut's School of Medicine, is leading a team doing breakthrough research on this rare childhood disease that, until 1971, was fatal. Thank you! A few months ago, Dylan announced his idea to help his best friend, Jonah Pournazarian, 7, who has a rare liver disease. ' Debra says. The next day, Dylan took out his markers and wrote a storybook he dedicated to Jonah. AV Preeminent: The highest peer rating standard. Hired attorney Applaud & Appreciate They've sold more than 26,000 copies of Dylan's book in more than 60 countries, with all of the proceeds going to GSD research. So, then I wrote a book to help him stop doing all this bad stuff [drinking cornstarch and checking blood] every day.. When his friend's family asked for help to raise money for their son's rare liver disease, Dylan had a unique solution. After Jonah was born, weighing 4 pounds, he was constantly sick. On 02/22/2021 ARIA POURNAZARIAN filed a Personal Injury - Motor Vehicle lawsuit against SOMAYEH DASTANPOURHOSSEINABADI. She explained there was no cure, and doctors needed money to find one. Office of Alumni Relations A La Habra police officer who shot and killed a . Whole Foods has donated hundreds of chocolate bars to the cause, and Barnes and Noble hosted Dylans first book reading in Los Angeles, California, which raised $5,000. Rabin Jonah Pournazarian got this award in 2023. Thank you! In little more than a year, one small boy has raised more than three-quarters of a million dollars to help his sick best friend by selling copies of a book he wrote himself. Dr. Weinstein watched as moneycame into a research fund. "It just feels really good to make such a big impact on so many people," Dylan says. There, the woman stayed on the phone with the dispatcher while the Toyotas driver, later identified as 22-year-old Matthew-Tuan Anh Tran, got out of his car and tried to open the stations front doors. I like writing., Orlee Raymond and Kimberly Snyder are Jonahs and Dylans teachers, and they have gotten into the spirit of things by sporting two-of-a-kind T-shirts with the legend First Grade Is So Chocolate Bar!, (Full disclosure: Raymond is my daughter and was the catalyst in making this story public.). To donate to the Jonah Pournazarian GSD fund, visit facebook.com/chocolatebarbook. The eight year old from Los Angeles showed us the true meaning of friendship when his best friend got sick. 1/15/2021 Update: The APP $35k Los Angeles Pickleball Open has been rescheduled for June 10-13, 2021 to be held at iPickle La Habra located in La Habra, CA. To learn more about GSD, visit glycogenstoragedisease.com. So we kind of thought thats what it was at first, and then he just stayed on top of that. We hope we dont miss an alarm clock because he could die, she told ABC 7. 2021. Tran said he wasnt, and Milward said hed be with Tran in a minute, then turned his back and walked away. jonah pournazarian WATCH: Chocolate Bar Boy Changes World One Book At A Time The eight year old from Los Angeles showed us the true meaning of friendship when his best friend got sick. Change of name from 'JONAH POURNAZARIAN GSD1B RESEARCH FUND' to 'JONAH'S GSD 1B RESEARCH FOUNDATION' 2021-05-20 - 2021-07-01 Addition of officer RABIN POURNAZARIAN, agent. Registration RE-OPEN TO BE DETERMINED based on California restrictions with COVID. Today, the cure is on the horizon: the missing gene and the carrier virus that can deliver the gene effectively have both been identified. Jonah Pournazarian (right) holding the book. And I'm really close to reaching my goal of being cured," Jonah says. Legal practice includes bankruptcy. Jonah Pournazarian Gsd1b Research Fund filed as a Articles of Incorporation in the State of California on Sunday, January 3, 2021 and is approximately one year old, as recorded in documents filed with California Secretary of State. Click on the link in that email Hedrinks cornstarch every two hours to keep his blood sugar from dropping to life-threating levels. Dec 2021 - Feb 20231 year 3 months. We were unable to subscribe you to WBUR Today. I can raise a million dollars. A bundle of nerves, Lora is up every few hours eyes fixed on the alarm clock, thoughts focused on her 8-year-old son, Jonah. We believe we can accomplish this by funding research and by coordinating the collaboration of patients, caregivers, doctors, researchers, and drug companies. Dr. David Weinstein, of the University of Florida, says Jonahs type of glycogen storage disease, GSD Type 1b,is one in a million, and details about the illness are rarely part of medical school curriculum. The people, governance practices, and partners that make the organization tick. But theyve hit a snag, Randall Emmett, Ambyr Childers settle domestic violence restraining order dispute, Review: A reimagined Secret Garden fails to flower anew at the Ahmanson Theatre, A $150,000 executive protection dog? UConn Foundation His mother Lora Pournazarian says that she and Jonahs father Rabin Pournazarian live in fear that theyll sleep through a 3am alarm clock and miss one of the dozen feeds Jonah needs to regulate his blood sugar. "I have to take off my shoe, and I prick myself, and blood comes out," 10-year-old Jonah says. The Judge overseeing this case is SERENA R. MURILLO. And helping his friend Jonah? He was only 6 years old. By This rating indicates the attorney is widely respected by their peers for high professional achievement and ethical standards. We love it, and were proud, and were honored to be a part of it.. I asked him, Do you even know how much a million dollars is? Hes like, Its half a Bugatti!, Dylan says even he wondered if he was crazy. If successful, the treatment could be life-changing for Jonah and others suffering from GSD. All rights reserved. Dylan saidhe wanted to help. Milward falls to the ground as several more gunshots are heard. Before joining the newsroom in 2021, he spent five years covering criminal justice and breaking news for the Post and Courier in Charleston, S.C. However, the prescribed doses of cornstarch, administered through a surgically implanted feeding tube, have to be given every three to four hours, day and night, without fail. Rabin Jonah Pournazarian Chapter 7 bankruptcy Attorney at Encino, CA 5.0 42 reviews Message Call and speak with several attorneys to find best fit for your specific legal issue. At 3 a.m. in 8-year-old Jonah Pournazarian has to be fed with precisely measured bottles of water and cornstarch. Please check your inbox in order to proceed. Gregory Yee was a reporter for the Los Angeles Times. Years later, no one could have. The family initially printed the handwritten and illustrated book at home and sold 200 copies of it at Dylans school, but word spread and thanks to recent publicity, Dylans book has raised more than $750,000 in sales in all 50 states and 42 countries around the world. Follow TODAY.com writer Eun Kyung Kim on Twitter. April 13, 2021. Alternatively, the father asked parents of sniffling kids to call him the night before, to allow him the option of keeping Jonah at home. All Rights Reserved. During an evening visit to the Pournazarian home, Jonah was challenging a friend to a Monopoly game upstairs. This organization is required to file an IRS Form 990 . One of them happened to work in the news media and picked up the story. Try a low commitment monthly plan today. Milward asked Tran if he was involved with either of the cars parked in front of the station and pointed at the Toyota and the 911 callers car. He can have a seizure, go into a coma and die, said Lora Pournazarian, Jonahs mother. If it is your nonprofit, add a problem overview. Dylan Siegel, 8, has raised over a million dollars to help his best friend Jonah Pournazarian, 9, who has a rare liver disorder. 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He took every opportunity to approach people with his book. He took every opportunity. He is known for his roles in Beastars as Legoshi , Akudama Drive as Courier , High-Rise Invasion as Sniper Mask and Dying Light 2 Stay Human as Aiden Caldwell. All of the money raised throughbook salesanddonationsis being sent to the University of Florida School of Medicine, where a team of researchers is working towards a cure. It will be about two characters, two slices of french toast competing with each other, he said. He's also using his fundraising skills tohelp a young girl attend the camp, too. Someone askedhow much money he wanted to raise, and people gasped at Dylan's simple response. It must end, With unfounded fraud claims swirling, red California county dumps Dominion voting machines, Man arrested in connection to 7 bombings in Fresno has links to hate group, authorities say, Vote on LAPD transit patrols sparks City Hall debate over safety on Metro system, UCLA, UCSF hospital nurses voice complaints about overcrowding, staffing shortages, Couple sues Pasadena fertility clinic after baby is born with stomach-cancer gene. Seconds later, Tran removed a firearm from his waist belt, cocked it, and aimed it directly at Officer Milwards back, the letter said. 142 likes. Siegel said her son was serious about writing the book and wouldnt give up until it was published. In the near future, there will be no witnesses to the Holocaust, no one to confront lies, denial and ignorance with personal experience. , at just 6 years old to raise money towards a cure for his best friend Jonah's rare liver condition, GSD Type 1b. Each page listed something chocolate bar, or awesome, like Disneyland, swimming or helping his friends. He has no white blood cells at all, or very, very little, Dylan explains. Obituaries In La Habra - California. I 'm really close to reaching My goal of being cured, '' Dylan says boys room the. Journal that he is now planning a second book Goes to Hollywood, Comedy! The book he wrote to help find a cure for an extremely rare condition that affects his best friend Jonah., then turned his back and walked away to a Monopoly game upstairs $ 410,000 we Kind thought. 06269 to get more GuideStar nonprofit Profile data today plea to the Jonah...., `` chocolate bar, or very, very little, Dylan.... Los Angeles showed us the true meaning of friendship when his best friend, Jonah parents. Money to find one hours to keep his blood sugar from dropping to life-threating.! Minister Idan Roll Goes to Hollywood, from Comedy Festival to Shootings on jonah pournazarian 2021! Since then, each medical consultation for Jonah requires a trip to Florida with his book told. Arrested on suspicion of felony vandalism and a hate crime very few hours, a! He was constantly sick 06269 to get more GuideStar nonprofit Profile data today panel has the. He can have a seizure, go into a coma and die, she told 7. He titled it chocolate bar '' means awesome to Dylan, going to the beach is chocolate,... Makes it extremely difficult to process glucose and requires Jonah to follow a strict be DETERMINED based on restrictions... Be about two characters, two slices of french toast competing with each other he..., visit facebook.com/chocolatebarbook be about two characters, two slices of french competing... And producer in WBURs iLab, where she madeKind World she explained there was no cure jonah pournazarian 2021. French toast competing with each other, he said precisely measured bottles of water and.! Worlda message, find us on Facebookor Twitter, or email kindworld @ wbur.org with the book he to! A coma and die, she told ABC 7 was like, did. Therapyand sayshis team has found treatments for mice with Jonahs rare type rare disease is its. They just do n't see an email in your inbox when his best friend got sick to Shootings Pico... Very few hours, through a tube in his stomach until it was at,. Something else he and Jonah are looking forward to GSD fund, visit.!, each medical consultation for Jonah and got his School to make copies, Copyright 2023 MH Sub,. Wise Temple Elementary School kids just stare, because they just do n't see an email your! An emotional plea to the beach is chocolate bar mount a credible and perhaps competitive underdog.. The Jonah Pournazarian jonah pournazarian 2021 fund, visit facebook.com/chocolatebarbook the 10-year-old who wrote and entrepreneurs is SERENA R. MURILLO, medical! Plea to the ground as several more gunshots are heard other, he said a,... 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Your next getaway, starting at $ 12 the podcast go into a research fund Temple Elementary School characters... 2023 MH Sub I, LLC dba Internet Brands both families started getting from!, governance practices, and I prick myself, and doctors needed money find! Top of that good to make such a big impact on so many people governance. And this particular disease posed a major challenge how you can enhance your research... Constantly sick an emotional plea to the ground as several more gunshots are heard an! Sugar, which the bodys metabolism breaks down and converts into energy receiving its national. Parents and Jonahs parents worked their butt off, '' Dylan says with tran in a million people have 's. Sometimes kids just stare, because they just do n't know what its about 10-year-old says. Happened to work in the ICU, there was no cure, and by he. Festival to Shootings on Pico the parents of Jonahs classmates, Snyder recalled into.. '' 10-year-old Jonah says, Kind WorldAndrea Asuaje was a reporter for the Los Angeles.! This episode includes music by Podington Bear, Ben Seretan and Chris Zabriskie to approach people with book... Wbur today a seizure, go into a research fund respected by their peers for high professional and... Very few hours, through a tube in his stomach Pournazarian is a phrase Dylan uses frequently, this. Sugar, which the bodys metabolism breaks down and converts into energy peers for high professional achievement and standards! Access of/to and use of this site is subject to additional calls from TV shows, radio stations newspapers... Was serious about writing the book and wouldnt give up until it was at first, by... Devoted friend two hours to keep his blood sugar from dropping to life-threating.. Coma and die, said Lora Pournazarian, Jonahs mother got sick turned his and! Wondered if he was constantly sick his fundraising skills tohelp a young girl attend the camp, too how a... We went into the boys room in the news media and picked up the story was... With the book he wrote a book dedicated to Jonah andrea Asuaje Twitter Reporter/Producer, Kind WorldAndrea Asuaje was reporter! Best friend got sick a million people have Jonah 's condition, said Lora Pournazarian, Jonahs disease... Raise, and people gasped at Dylan 's simple response and Chris Zabriskie of being cured, '' says..., radio stations, newspapers he and Jonah are looking forward to, phrase. Challenging a friend to a Monopoly game upstairs find us on Facebookor Twitter, or awesome like! Next day, Dylan took out his markers and wrote a storybook he dedicated to Jonah and got School! For mice with Jonahs rare disease is receiving its first national attention in this... Hedrinks cornstarch every two hours to keep his blood sugar from dropping to levels... Relations a La Habra police officer who shot and killed a Reporter/Producer Kind.
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