1974 - 2009 - Reye`s Syndrome
Transcription
1974 - 2009 - Reye`s Syndrome
1974 - 2009 In The News REYE’S SYNDROME V o l u m e 1 , I ss u e 2 Fall 2009 Page 1 P R E S I D E N T ’ S M E S S AG E Dear Friends, 35 years young, and the Foundation —which is You — is still strong and cultivating great accomplishments! The first quarter of 2009 saw the foundation inundated with Novel H1N1 Flu phone calls and emails coming from parents from all over the world. A new Novel H1N1 Flu Family Preparedness Guide was created by the Foundation and made available to the public both through the office and on the NRSF website. Feedback on the new brochure was astounding! Board of Directors: John E. Freudenberger President Larry M. Lasky Vice President Robert McKeown Treasurer Terri J. Freudenberger Secretary Marianne Piemonte Aspirin Committee Chair Thomas H. Glick, M.D. Chairman, Scientific Advisory Board Trustees: Barbara A. Bogenschutz James F. Johnson Barbara A. Ortiz Stephen Pumm Shirley Rice We thank all of our past and present Board Members and Trustees for all of their hard work, and for their selfless commitment over the years. 1974—2009 In April, in the midst of the Novel H1N1 Flu outbreak, concerned about a possible Reye's Syndrome outbreak on the heels of this H1N1 flu, the CDC updated their website and literature to include an extensive amount of information to parents and caregivers about Reye's Syndrome and salicylate avoidance. The news media, Homeland Security, the NIH, all incorporated the CDC’s information into their own materials. Awareness of Reye's Syndrome is being treated as an important side issue to this Novel H1N1, as it well should be. In June, distinguished doctors and medical professionals from across the United States, Nova Scotia, and Australia along with Reye's Syndrome Survivors, American Legion Child Welfare Foundation Board Members, and Parents all joined us at the 35th Annual Meeting—a meeting that won’t ever be forgotten! This past August of 2009, the National Reye's Syndrome Foundation commemorated 35 years of Awareness, Research, and Service to parents, caregivers, medical professionals, and especially to children. August 20th through the 25th saw us at the 91st Annual American Legion Convention in Louisville, Kentucky. The NRSF was received warmly and with open arms. We passed out over 10, 000 brochures, bookmarks, and ingredient cards, and we were honored to participate, once again, with this dynamic and wonderful organization. Our new “Be a Member, Add a Member” 2010 Membership Drive kicked off with a largesized-postcard mailing, a format we hope to use in future years with just as much enrollment as in the past, if not more. We continue to move ahead on awareness projects, and we continue to fight the unending fight for salicylate package labeling. The NRSF's 35 year Commemorative book is now available, and if you are interested in having a copy see the next page of this newsletter for more information. Ralph Waldo Emerson once said; “What lies behind us and what lies before us are tiny matters compared to what lies within us.” Your input, your assistance, your hard work is of profound value. John E. Freudenberger President Page 2 35 YEAR COMMEMORATIVE BOOK For the first time ever, the NRSF has compiled a 35 year historical collection of events, research, and all of the people who contributed to making the Foundation what it is today. It was all about saving lives, and save lives we did, and still do today. It was a grass-roots movement that spanned the United States and abroad, where special parents and families joined together in determination and with a common goal. It is a history to be proud of, a history that will stand the test of time, a history that needs to be told. INSIDE THIS ISSUE: The book; “35 Years, The National Reye's Syndrome Foundation” is now available. You can use the enclosed envelope to pre-order your copy, or you can order by phone by calling the foundation, or on-line by using the link provided on the NRSF website at www.reyessyndrome.org. Every child’s story told to us over the past 35 years is included in the book, as are all the fundraisers, chapter participants, medical researchers and papers, celebrities, politicians, along with everyone who participated in the search for a cure and promoted awareness. Since we only printed a thousand books and they are available on a first come, first serve basis, we encourage you to call the office to reserve your copy today at 800-233-7393. National Headquarters 426 N. Lewis Street PO Box 829 Bryan OH 43506 Toll Free: 1-800-233-7393 Direct: 419-924-9000 Fax: 419-924-9999 Email: nrsf@ReyesSyndrome.Org Website: www.ReyesSyndrome.Org President's Message 1 35 Year Commemorative Book 2 35th Annual Meeting 3 Novel H1N1 7 2009 ALCWF Grant 7 Texas MMWR 7 Reye's Syndrome & H1N1 8 NRSF at the Legion Convention 8 Ways to Help 9 One of the Lucky Ones 10 To Remember 11 To Honor 12 In the Palm of Her Hand 13 Brief But Bright 15 Friends Lost 16 John, My Brother 17 Confusing Headlines 18 Page 3 35th Annual Meeting Saturday June 6 , 2009 The Blackwell Inn At Fisher College Ohio State University 2110 Tuttle Park Place Columbus Ohio Commemorating 35 Years 35th Annual Meeting - Columbus The 35th Annual Meeting was truly awe inspiring! National Reye's Syndrome Foundation President, John Freudenberger, opened the 35th Annual Meeting, welcoming everyone to Columbus, Ohio. He soon turned the meeting over to Dr. Thomas Glick, NRSF’s Scientific Advisory Board Chairman, and Dr. Glick moderated the remainder of the meeting, introducing the speakers and guests. Many of the Foundation’s initial research doctors were in attendance, as was Dr. Jim Baral, who worked with Dr. Reye in Australia. Dr. Baral was our first speaker and he took us on a journey that began with his perilous escape from Krakow, Poland during WWII, explaining how he ended up in Australia and working with Dr. Reye on Reye’s Syndrome. Absolutely fascinating! Dr. Karen Starko was our next speaker and our Keynote Speaker. She presented an interesting and informative history on the association of aspirin and Reye's Syndrome, which took the research of the dangers of aspirin to a far deeper level of understanding than any of us had ever been aware of before. Her book, when it is complete, is going to be very powerful indeed and we look forward to reading about her findings in more detail. Our luncheon speaker was Dr. Lawrence Schonberger from the CDC. He spoke of his pride in the work he and the NRSF had done in relationship to linking aspirin and Reye's Syndrome, and in getting the word out to parents and caregivers about the risk of salicylates. He stated that he is committed to assisting the NRSF in any way he can, and looks forward to his continued work with us. In the afternoon session, Lois Hall, Executive Director Ohio Public Health Association, and formerly with the Ohio Department of Health, spoke of her involvement with the NRSF and the Ohio Study. She spoke about her deposition with the aspirin companies during the time we all worked so hard toward getting labels on aspirin packaging. It was an emotional and powerful presentation and there was not a dry eye in the room when she sat down. Dr. John Crocker, from Halifax, Nova Scotia, then brought us up to date about the continuing research he is doing, and what he is seeing now in patients who present with Reye's Syndrome. His presentation was quite informative! Dr. James Heubi, the National Reye's Syndrome Foundation’s Medical Director then spoke to us of his experience in being associated with the NRSF and acknowledged the work of the Foundation, specifically of the importance in continuing the Foundation’s work in education and awareness. Two distinguished Board Members from the American Legion Child Welfare Foundation were present, Mr. Robert Caudell and Mr. Elmer Furhop. Both accepted Service Awards for the American Legion’s 31 year commitment to the National Reye's Syndrome Foundation in spreading Reye's Syndrome Awareness. There has never been a more powerful partnership than the one between the ALCWF and the NRSF, and the Foundation can not thank them enough for all they and their members have done for children over the past 31 years. All of our speakers were fabulous, and we profoundly thank them for giving of their time to join us at our 35th Annual Meeting. John and Terri Freudenberger, along with Dr. Glick, then presented Research Awards to: Dr. Jim Baral Dr. Baral was a Resident Pathologist in Sydney Australia in 1963, working with Dr. Ralph Douglas Reye on research entitled, “Encephalopathy With Fatty Degeneration of the Viscera,” now commonly referred to as Reye's Syndrome. Dr. Baral is now affiliated with Mount Sinai Medical Center in New York City. He is a Diplomat of the American Board of Dermatology and Pediatrics and is a member of several medical societies including the American Society of Laser Medicine and Surgery. In 1997, he was named Mount Sinai School of Medicine’s Teacher of the Year. Dr. Karen Starko Keynote Speaker; Dr. Starko entered the Epidemic Intelligence Service (EIS) of the Centers for Disease Control in 1978 and was stationed at the Arizona Department of Health Services, in Phoenix, Arizona where she conducted the first quantitative study linking salicylate, most commonly aspirin, with Reye's Syndrome and a study with Floribel Mullick, M.D. of the Armed Forces Institute of Pathology, showing the similarities between the pathology of Reye's Syndrome and salicylate intoxication. She is currently working on a book detailing the history of Reye's Syndrome. Page 4 Dr. June Aprille, Ph.D. Dr. Aprille is a member of the National Reye's Syndrome Foundation’s Scientific Advisory Board. She has published extensively and presented regularly at conferences and seminars. She was a teacher and an administrator at Tufts University, an Assistant Professor of Biology in 1977, promoted to Associate Professor in 1980 and to Professor in 1986. From 1987-2001 she held the Henry Bromfield Pearson Professor Chair in Natural Sciences. She also served as Associate Clinical Professor of Pediatrics in the School of Medicine. Dr. Aprille was Associate Provost for Academic Affairs at Tufts from 1986-89 and then Vice Provost for the following two years. Dr. Aprille had been Provost and Vice President for Academic Affairs, and Professor of Biology at University of Richmond since 2001. Currently, Dr. Aprille serves as Provost of Washington Lee University in Lexington, Virginia. Dr. John F. S. Crocker, MD, FRCPC Dr. Crocker is a member of the National Reye’s Syndrome Foundation’s Scientific Advisory Board. He has a long list of credentials and appointments including the University of King's College, Halifax, Nova Scotia, MD, Dalhousie University School of Medicine, Halifax, Nova Scotia, Fellow, Royal College of Physicians and Surgeons of Canada, Assistant Professor of Pediatrics, Dalhousie University, Halifax, Nova Scotia Associate Professor of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Professor of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Adjunct Professor of Pediatrics, Memorial University, Newfoundland. Dr. Darryl De Vivo Dr. De Vivo is a member of the National Reye's Syndrome Foundation’s Scientific Advisory Board. Dr. De Vivo is the Sidney Carter Professor of Neurology, Professor of Pediatrics, and Director Emeritus (1979-2000) of the Pediatric Neurology Service at Columbia University Medical Center in New York City. He also is the Associate Chairman for Pediatric Neurosciences and Developmental Neurobiology, the Founding Director of the Colleen Giblin Research Laboratories for Pediatric Neurology, and CoDirector of the Center for Motor Neuron Biology and Disease at Columbia University Medical Center. Dr. Thomas Glick Dr. Thomas Glick is the Scientific Advisory Board Chairman for the National Reye's Syndrome Foundation. Dr. Glick is Chief of the Division of Neurology at Cambridge Health Alliance and Professor of Neurology, Harvard Medical School. He served in the Epidemic Intelligence Service (EIS) at the CDC (U.S. Public Health Service) where he became Chief of the Neurotropic Viral Disease Unit in the Epidemiology Program. At the CDC he started the surveillance system for Reye’s Syndrome in the United States and studied Reye’s epidemiology. Thereafter, he carried on work on Reye’s in Boston and became increasingly involved in the work of the National Reye’s Syndrome Foundation. In the American Academy of Neurology he headed the Section on Neurological Education and the Patient Safety Committee. Dr. James E. Heubi Dr. Heubi is the Medical Director for the National Reye's Syndrome Foundation. He is Professor/Associate Chair for Clinical Investigation of Pediatrics, Associate Dean for Clinical and Translational Research, Co-Director Center for Clinical and Translational Science and Training University of Cincinnati College of Medicine Children's Hospital Medical Center. Dr. Heubi's areas of practice interests include liver disease in the newborn including inborn errors of bile acid metabolism and complications related to end-stage liver disease and liver transplantation. His research includes mechanisms of human cholesterol absorption and synthesis. Dr. Milo D. Hilty Dr. Milo Hilty is recently retired now as Medical Director, Clinical Study Center, Columbus Children's Hospital, Columbus, Ohio. He served as the Medical Director, Pediatric Clinical Trials International Columbus Children's Hospital, Columbus, OH, as Director, Vaccine Research and Development Ross Products Division, Abbott Laboratories, Columbus, Ohio, also as Director, Clinical Research/Infectious Diseases Ross Products Division, Abbott Laboratories, Columbus, Ohio and as Clinical Professor - Department of Pediatrics The Ohio State University College of Medicine, Columbus, Ohio. Dr. Hilty researched and wrote several papers on Reye’s Syndrome, as well as other major pediatric issues. Research papers about Reye's Syndrome, published by all of the doctors here who received Research Awards, as well as other doctors who were not present at the 35th Annual Meeting, can be found at Pub Med on the Internet at www.ncbi.nlm.nih.gov/ pubmed/ The PubMed database comprises more than 19 million citations for biomedical articles from MEDLINE and life science journals. Citations may include links to full-text articles from PubMed Central or publisher web sites. PubMed is a service of the U.S. National Library of Medicine and the National Institutes of Health All of our Research Doctors have papers there, and many can also be downloaded from the NRSF website’s library on the Internet. _____________________ _ More information about the American Legion Child Welfare Foundation can be found at www.legion.org/cwf on Page 5 John C. Partin, M.D. Dr. John Partin is a member of the National Reye's Syndrome Foundation’s Scientific Advisory Board. He is a graduate of the University of Cincinnati College of Medicine in Cincinnati, Ohio, and completed a pediatric residency at Cincinnati Children's Hospital Medical Center. He was a practicing pediatrician and pediatric gastroenterologist, Program Director of the Division of Pediatric Gastroenterology and Director the NIH-funded General Clinical Research Center at Cincinnati Children's Hospital where he, Jackie Partin and William Schubert made multiple seminal observations regarding Reye's Syndrome. He was Chair of Pediatrics at State University of New York at Stony Brook and is now retired, living in Virginia. Doctors not present at the 35th Annual Meeting who also received Reasearch Awards included; Dr. Brian Andresen Dr. Robert Bobo Dr. Paul Coates Dr. Robert Couch Dr. Ronald David Dr. Larry E. David Dr. Jerome Haller Dr. Ellen Kang Dr. William Schubert Dr. Inderjit Singh Dr. Philip Sunshine Dr. Joel Taubin Dr. Doris Trauner Jacqueline S. Partin, M.S. Jacqueline was a life long collaborator with John Partin and William Schubert who produced multiple seminal observations regarding Reye's Syndrome while a Research Associate at the Children's Hospital Medical Center. She maintained her interest and continues to work on areas of cell biology while at the State University of New York at Stony Brook and in Virginia. J. Dennis Pollack, Ph.D. J. Dennis Pollack, Professor and Vice-Chairman Molecular Virology, Immunology and Medical Genetics Emeritus, Ohio State University College of Medicine, Ohio State University, Columbus, Ohio. Dr. Pollack served as the National Reye's Syndrome Foundation’s founding Scientific Advisory Board Chairman, as Chairman of the Foundation's Grant Committee, and as the Foundation’s Editor in Chief. Dr Pollack edited Publications such as “Reye's Syndrome; Proceedings of the International Conference on Reye's Syndrome”, and each of the Journals of the National RS Foundation; biannual professional publications containing original reviewed scientific articles, proceedings of meetings, monographs or matters of professional interest on all aspects of Reye's Syndrome. Dr. Pollack, Professor Emeritus, has now retired yet he still makes himself available to the Foundation. Lawrence B. Schonberger, M.D., M.P.H. Dr. Schonberger is currently a Distinguished Consultant and Assistant Director for Public Health, Division of Viral and Rickettsial Diseases, at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. He first joined the CDC in 1971 as an Epidemic Intelligence Service (EIS) Officer in the epidemiology unit responsible for poliomyelitis surveillance and other virus-related neurological illnesses, including Reye Syndrome. Since 1976, he has supervised the epidemiology group stationed at CDC that has conducted epidemiological surveillance and investigations of Reye's Syndrome. In this position, he played an important role in markedly reducing the public health impact of Reye's Syndrome through documenting and publicizing its strong association with salicylate exposures. Dr. Schonberger remains highly interested in Reye's Syndrome and enjoys working closely with the National Reye's Syndrome Foundation. Lois Hall: M.S. Lois Hall, M.S., retired from the Ohio Department of Health in May 2008, after nearly 30 years of service. Among her work there, in addition to her work in the area of Reye’s Syndrome, she was also responsible for the surveillance of Kawasaki Disease, Legionnaire’s Disease, HIV/AIDS and general infectious diseases; HIV/AIDS Prevention and Risk Reduction; and finally Comprehensive Cancer Control. She is currently the Executive Director for the Ohio Public Health Association. Lois is also a Certified Grief Recovery Specialist and National Trainer for the Grief Recovery Institute. Alvin D. Jackson, M.D., Dr. Alvin D. Jackson, Director of the Ohio Department of Health, has a long history of providing health care to Ohioans. “Ohio’s doctor,” as he is known, became director of the Ohio Department of Health—or ODH—June 2007, following his appointment by Gov. Ted Strickland. Page 6 Robert Caudell Deputy Director Americanism and Children & Youth Division The American Legion. Bob Caudell, Crawfordsville, Indiana is a Vietnam era veteran of the U.S. Army and Executive Secretary of the American Legion Child Welfare Foundation. He joined the Legion’s headquarters staff in 1991. Elmer Furhop Elmer Fuhrhop from Hamler, Ohio is a WWII U.S. Army veteran and a member of the American Legion Child Welfare Foundation Board of Directors. He is also Chairman Emeritus of the Legion’s National Commission on Children & Youth. John & Terri Freudenberger Co-Founders of the National Reye’s Syndrome Foundation are presented an award by Dr. Thomas Glick for 35 years of unwavering service to children. Service Awards At dinner, Service Awards were presented to NRSF Board Members and NRSF Chapter Representatives. Shown is James Johnson, NRSF Trustee and Southern California Chapter President with his Service Award. Medical Professionals from front left: Dr. James Heubi, Lois Hall, Dr. Darryl De Vivo, Dr. J. Dennis Pollack, Dr. June Aprille, Jackie Partin, Dr. Milo Hilty, Dr. Jim Baral, Dr. Tom Glick. Back row left to right; Dr. Larry Schonberger, Dr. Alvin Jackson, Dr. Karen Starko, Dr. John Crocker, Dr. John Partin, Terri and John Freudenberger. NRSF Board Members, from front left; Dr. Heubi, Marianne Piemonte, Shirley Rice, Barb Bogenschutz, Barb Ortiz, Larry Laskey, Dr. Glick. Back row left; Terri Freudenberger, Bob McKeown, Steve Pumm, Jim Johnson, John Freudenberger. The CFW: American Legion Child Welfare Foundation “Our foremost philanthropic priority is to provide other nonprofit organizations with a means to educate the public about the needs of children across this nation.“ To date, over $9 million has been awarded to organizations to assist the children of this country from the American Legion Child Welfare Foundation Inc. Over the past 35 years, the Child Welfare Foundation has provided more than $234,000 in grant money to the National Reye’s Syndrome Foundation, providing for School Mailings, Video Documentaries , Public Service Announcements, Printing of Brochures and Medical Literature, and assisting the NRSF with awareness projects involving schools and hospitals across the United States. Page 7 NOVEL H1N1 AND REYE'S SYNDROME – BECAUSE YOU NEED TO KNOW…. New Novel H1N1 Flu Family Preparedness Guide brochures were developed in April of 2009 due to the overwhelming amount of phone calls the office was receiving from parents and medical professionals who wanted more information about this strain of flu and Reye's Syndrome. We also updated our Because You Need to Know brochure, and both were passed out at the 91st Annual American Legion Convention in Louisville, Kentucky in August, where convention goers made special trips to visit the NRSF booth to pick up these brochures once word got out they were available. Two new videos have been placed on the NRSF website. One, featuring the CDC’s Kidtastics H1N1 radio PSA was combined with NRSF created images to produce a terrific video for kids about taking care of themselves when they feel sick or have the flu. The other video features Angela, the little girl on the front of the H1N1 brochure, talking about Reye's Syndrome. Both videos can be downloaded and shown at schools, organizations, clubs, doctor’s offices; anywhere to promote Reye's Syndrome Awareness. Everyone is welcome to download both of the brochures and the videos from our website at www.ReyesSyndrome.Org. 2009 SCHOOL MAILING—ALCWF GRANT In July of 2009, the NRSF applied for a grant from the American Legion Child Welfare Foundation. The grant asked for support in mailing out 131 thousand oversized postcards to every public, private school, and university, across the United States. In the past we have mailed our information to district Superintendents and this year we wanted to be absolutely certain that individual schools were receiving our information. We did not want to rely on busy district offices where our information might get over looked, especially this year, with Novel H1N1 attacking our focus age group; children. October 16th, we were notified that we had been awarded the grant. We immediately went to work getting Reye's Syndrome and Novel H1N1 information out to those 131 thousand schools. Encourage schools in your area to visit the NRSF website and download Reye's Syndrome information! A great big Thank You! goes out to the American Legion Child Welfare Foundation for once again supporting our awareness and saving children’s lives! TEXAS MMWR—NOVEL H1N1 & REYE’S One in four children seen was given both peptobismol and aspirin! One in four! Those are the odds we are seeing… Our work is not done and Awareness and Education is still desperately needed! On May 28, 2009, the Dallas County Department of Health and Human Services notified CDC of four children with neurological complications associated with Novel influenza A (H1N1) virus infection admitted to hospitals in Dallas County, Texas, during May 18--28. Patients were aged 7--17 years and were admitted with signs of influenza-like illness and seizures or altered mental status. Three of the four patients had abnormal electroencephalograms. Patient D. On May 27, a black male aged 11 years with a history of asthma was [admitted] because of 1 day of fever and vomiting. A household contact, his grandmother, had an upper respiratory infection 3 days before his illness. One day before admission, he had a fever of 102.0°F, fatigue, headache, abdominal pain, and vomiting, and was given bismuth subsalicylate twice and one 81 mg aspirin. Fortunately, all four patients recovered fully and had no neurologic sequelae at discharge. The entire MMWR report can be read at www.cdc.gov/mmwr/ preview/mmwrhtml/mm5828a2.htm Page 8 R E Y E ’ S S Y N D RO M E A S E R I O U S F AC T O R I N R E G A R D S T O N OV E L H 1 N 1 F L U As soon as Mexico announced its problem with “Swine Flu” the Foundation’s phone and email were inundated with questions from worried parents whose children were returning from Mexico Spring-Break vacations, and from school nurses wanting more information. At the end of April, 2009, an email from the Foundation was sent to Dr. Larry Schonberger at the CDC stating “...we need to intensify the awareness of Reye's Syndrome or at the least the “No Aspirin for Children” comment as we certainly don’t want to have an outbreak of Reye's Syndrome along with this flu! People have forgotten... and that is what scares us the most! Is there anything you can do?” Dr. Schonberger immediately forwarded the email to other CDC colleagues and the CDC immediately updated their on-line and printed materials to include quite a lot of information about aspirin products and Reye's Syndrome. Once the CDC included the Reye's Syndrome warning, all other government agencies and even the news media adopted the same wording for their materials sent to parents, businesses, and schools. Dr. Larry Schonberger Kevin Jennings, Assistant Deputy Secretary of Education responded to a NRSF email inquiry with this statement; “As schools prepare to re-open for the fall and students come into close contact again with one another, health experts are predicting a large increase in cases of the H1N1 virus. As you probably know, the Federal government announced new guidelines for schools on August 7, 2009, which included specific information about excluding sick students and when closures may potentially occur. As part of this guidance, the Centers for Disease Control and Prevention (CDC) included specific language about Reye’s Syndrome’s potential dangers. As the U.S. Department of Education creates supplemental materials for schools and parents, we could include similar language to reiterate this message. We could also work with partner organizations, such as the National Association of School Nurses and the PTAs, to ensure that parents and caregivers receive the messages about Reye’s Syndrome and the use of appropriate medication to reduce fevers. We will also identify other mechanisms to disseminate information about H1N1, including Reye’s Syndrome, such as the Parent Information Resource Centers.” Thanks to Dr. Schonberger and the CDC, our message got across loud and clear and is out there once again, reminding parents and caregivers about Reye's Syndrome and aspirin containing products. Yet we still see reports like the Texas MMWR showing where children are still being given aspirin products for fever and flu. The phone rings at the office with several parents each day who had forgotten, or just did not know about Reye's Syndrome and salicylates. If Novel H1N1, or any flu or chicken pox outbreak occurs in your area, we would ask that you remind, or teach, parents and caregivers about Reye's Syndrome - for our Kid’s sake! N R S F A T T H E 9 1 S T A N N UA L L E G I O N C O N V E N T I O N The NRSF was invited to participate with an exhibit at the 91st Annual American Legion Convention, held this past August in Louisville, Kentucky. This is the first time the NRSF had been back to an American Legion Convention for more than ten years. More than 100,000 American Legion, Legion Auxiliary members, from 51 States and US Territories attended the convention this year. Members of the American Legion Child Welfare Foundation, and even some NRSF Members stopped by the booth to warmly welcome us back. The Foundation renewed a lot of old friendships and passed out Reye's Syndrome literature which was in great demand. We heard many comments like; “I need to give this to my Son or Daughter to read because they don’t know anything about Reye's Syndrome…” Many nurses and teachers stopped by the booth and picked up materials to share. The Foundation created a video using the CDC’s Kidtastics H1N1 radio PSA and showed it during the convention. Everyone thought it was very informative and even wanted copies to take home. The PSA is now on the NRSF website for all to view. Spangler Candy Company of Bryan, Ohio, donated several cases of their famous Dum-Dum suckers to the Foundation to give away at the booth. All in all, it was five days well spent and the Foundation spread Awareness to thousands of families that week. We are looking forward to attending the 92nd Annual American Legion Convention in Milwaukee at the end of August in 2010. Kevin Jennings Page 9 WAYS YO U C A N H E L P Give a NRSF Membership as a Holiday Gift this year! Membership Gifts make great gifts for Co-workers and Family members. A special Card with your Gift of Membership will be mailed in time for the Holiday to the new Member, and a tax deductible donation receipt will be mailed to you. Give the Gift of Life… Give the Gift of Membership! Send us your old Cell Phone! The NRSF is collecting cell phones. We recycle them, collect a donation from the recycler, and they in turn clean the phones and give them to battered women shelters and to children who may need them so they can use the phone to call 911. Everyone wins with this program! You can do something good for the Foundation, for the Earth, and for those in need of an emergency phone! Mail us your old Cell Phone today! Include the NRSF in your Will, and give the Gift of Life… Contact the NRSF for a Planned Gift Giving booklet that explains all the different ways you can provide a Legacy of Life to the foundation. Until there is a definitive cure for Reye's Syndrome, the NRSF will remain committed to the health and well-being of those who are most at risk by continuing its work to provide Awareness. For 35 years, the NRSF’s Volunteers, Chapters, Representatives, Medical Advisors, and Researchers have watched over the safety of children in regards to salicylate products and we will continue to do so for as long as it takes to find a cure… Consider a Legacy of Life. Everyone who uses the Internet eventually uses a Search Engine. One search engine on the internet is donating dollars to charity for using their search engine at www.GoodSearch.com. Simply type in National Reye’s Syndrome Foundation into the ‘Charity Box”, click “verify”, and search the Internet as you normally would. You can even download the Good Search Toolbar making it easier to donate search dollars to the NRSF. If you shop on the Internet, starting at www.GoodShop.com, choosing the NRSF as your charity, then clicking on one of their 100’s of stores, a percentage or flat amount is donated to the NRSF just because you began your shopping there. We encourage all of our members to search from Good Search and shop from Good Shop to fundraise for the Foundation. Page 10 I’m one of the lucky ones. I survived Reye’s Syndrome. My Reye’s Syndrome survival story is a long one, complete with the flu, an accidental overdose of an anti-vomiting drug that no one knew I was allergic to, ambulance rides to two different hospitals, thinking that EMTs making conversation with my older sister were actually trying to get her phone number, plenty of needles and hospital tests, and what I’m convinced was an army of steroid-pumped bodybuilders holding me down so they could do a spinal tap. It includes three tries to put a tube down my nose so they could pump my stomach, my mother deciding not to call a priest to perform the sacrament of the sick for fear that I’d stop fighting for my life, and missing 18 days of school in a single marking period. But I was one of the lucky ones because my story ends with me recovering in the bed next to a girl who was, at the time, the oldest person in the Chicago area to have Reye’s. I was in eighth grade, she was in high school. Her condition was very serious and at a much more advanced stage than mine. And while, like me, she was one of the lucky ones because she survived, she had to relearn how walk, how to talk, and how to write. Over the years, I sometimes forget that I had Reye’s Syndrome. With the number of cases now so low, it’s easy to do. Plus, in the 35 years since then, I’ve never met any one else that had Reye’s. In fact, I’ve only met one other person who even knew someone else that had had Reye’s. But now, as the media run daily stories about H1N1 and how this flu strain could become a pandemic, I’m reminded of Reye’s Syndrome. And I worry. I worry about what will happen. Will there be more cases? I worry that we’ve become complacent and convinced that the danger of Reye’s has passed. I worry that parents – and teens and young adults who self-medicate -- won’t take the time to read the fine print and ingredients listings on the bottles that they carry in their messenger bags, backpacks and purses. Will they self-medicate to treat any flu-like symptoms? Will they really know what they’re taking? And if they don’t, will there be a spike in the number of Reye’s Syndrome cases reported? I worry that Reye’s is old news. Old news that might become new again. I urge everyone to print out the National Reye's Syndrome Foundation’s list of products that contain salicylates. Compare it to the listing of ingredients on the products in your medicine cabinet. Take it with you to the store and refer to it before you buy any over-the-counter medication. Give copies to those you love, those you know, and especially those who spend time with children, teens or young adults. Who knows? Your concern and caring could mean that another child is able to be one of the really lucky ones -- lucky enough to never become a Reye’s Syndrome statistic. Cindy Kluck-Nygren March 1974 Reye’s Syndrome Survivor • The list of products that contain salicylates that Cindy refers to is available on the NRSF website on the literature page; www.reyessyndrome.org/literature.html. There are also lists of commonly used items that do not contain salicylates available, too. • For posters, brochures, bookmarks and other Awareness Items, go to www.reyessyndrome.org/schools.html. Page 11 TRIBUTES Those we love don't go away, They walk beside us every day, Unseen, unheard, but always near, Still loved, still missed and very dear. ~ Anonymous TO Steven Willmott Browning Sr. S'lena Browning Michael Glace Susan Van Gorder Kristi Ellen Shaffer Sharon Shaffer Robert A. Todd Jackie Todd & Family Norman Schain Jordi Schain-Shuler Marianne Schain Kelly Carpenter James 'Harr' Harrington Oliver Steele Toivo 'Toy' Laitinen Vina Kingston Chuck & Lorena Krause Michael Glace Frankie Malatesta Susan Van Gorder Melonie & Christian Mujica Fred & Erin Henderson Bill Deso Susan Umphenour Owen Handley Susan Umphenour Randy John Kapp Edward & Karen Kapp Shirley Dettelbach John & Terri Freudenberger Elisa G. Knight Jerry & Jennifer Knight David William Jenkins Bill & Susan Jenkins Edward Keister Kathi Ann Keister Nancy Keister Sylvia Yost Joshua Reck W. Mack & Carol Hill Jeffrey Deimling Ralph & Rita Deimling Aaron Egolf Sandra Bodfish John E Lyon Melissa L Lyon Stanley & Rita Payne Joey Brockman Ginger Brockman Irving Hauss Gene & Helena Brody Jeffrey Gerald Littler HONOR, REMEMBER... Jody Littler Cheryl Denise Willingham Jennifer Doyle Denise Wilson Willingham Frank & Joan Marino Stephen & Angela Rosier Charlotte Brooks Irving Kanowitz MDE Leslie Jo Morris Patricia L. Morris Greg Bollinger SMSGT Robert Bollinger & Leah Jennifer Wellington Ray & Barbara Moore Donna Bracco Chuck & Lorena Krause Jason Charles Rasso Joyce Rasso Ruth Gulkis Barbara & Michael Klein Louis Pettine Susan Pettine George Chimento Christine & Matthew Doyle Sheila & James Salvo Edward Pettine Heather Hammond Leo & Frances Drury Janice Napert Jennifer & Robert Haller John & Ingeborg DeFusco Ryan Doyle Alix Ogden Matt Stark Matthew Soursourian Linda Painter Deb Dormody Buff Chace Frank & Margie Botelho Daniel Baudouin Rosemary P. Pettine James & Kathleen Biltcliffe Ferdinand & Claudia Scrivo Paul & Suzanne Boucher Barbara & Laurent Guay Tim & Charlotte Doyle Fall River Country Club Suzanne Cantwell Scott & Amanda MacDonald William & Laraine Joncas Promotional Advertising Assoc. Michael Garofalo Paul & Madeleine Leite Nancy & Jeffrey Murphy Sisters of the Heart Red Hat Soc. William & Janet Lapoint Karam Insurance Agency Inc James Pierce & Stephanie Fortunato Cornish Associates Dr. Gerald & Linda Monchik John & Kathryn Medeiros Carol Shapiro Joseph & Jeanne Sousa Stephen & Brenda Lopes Arthur & Paula Latessa Walter & Nancy Fraze William & Helen Little James & Louise Hardiman Paul & Paula Souza Kenneth & Virginia Brooks Jeffrey Pettine Amy Pettine Ruslon E. Smith Nancy Walnista Scott Thibeault Brenda Thibeault Cheryl Ann Packard Juanita Packard Christopher Schmidt Catherine & Harold Schmidt Christy Renea Aultman Larry & Toni Aultman Madeline Owens Monica Pacione Mary Pacione Paul Chacho Karol & Mary Chacho Rosemary Devlin Jeffrey Lasky Harold & Gloria Lipschultz Jeanne Jordan Robert & Alice Glaser Michael Weiland John & Terri Freudenberger Mark & Cathy Zraik John LaCascio Connie Quigley Michael F. Lagen Ignatious J. Lagen Kevin L. West Jacqueline Todd Eileen Cannell Howard & Linda Rudolf Page 12 TRIBUTES TO HONOR, REMEMBER... Debera A. Dugan Chris Viloria To Honor... James & Florence Dugan Beverly & Anthony Viloria Anna Galloway Belcan Corporation Rodney Strunk Gene & Joyce Strunk Scott M. Brody Helena & Gene Brody Jerry Vaughan Dalena Samuel Edward Wheeler Haselden, III William Haselden Ilima Freudenberger Karen Gibbs Tammy Lee Nolan Carolyn Reynolds Steven Douglas Hendershot Takako Hendershot Monica Pacione Mary Pacione JoAnna Lee Moore Gary & Bonnie Moore Kevin Pitterle James & Carol Pitterle Jennifer Schudel Mary & Paul Schudel Leanne Sue Lafreniere Lois Lafreniere Karen Buffington Del Pescio Barbara & Bennett Russell Randy Morgan Ron & Sheila Morgan Scott Umehira Howard & JoAnn Umehira John Dieckman Richard Flaville Kevin Arthur Patch Arthur & Carol-Lee Patch Christy Renea Aultman Toni & Larry Aultman Patrick & Angela Cosby Jeffrey Deimling Ralph & Rita Deimling Nan Robin Gorenstein Barbara & Herbert Gorenstein Christine Marie Siwek James & Nina Siwek Deanna Marie Clayton James Kasbohm Mary Judith Saeli John & Kathleen Saeli Thomas J. Adams Loretta Adams Michelle Lynn Alleman Grace E. Werner Lisa & David Slates Jay Lawrence Ginny & Paul Peterson Michael Pettine Susan Pettine Jeffrey Pettine Amy Pettine Kevin Pitterle Tim & Cindy Pitterle Rory K. Deckert Dale Deckert Michael Andreano Vincent & Rosemary Andreano David Jenkins Bill & Susan Jenkins John Thomas Mullican J.T. & Nancy Mullican Joey Brockman James & Dorothy Heyne Kimberly Moss Donald & Patricia Lange R. Michael Schonning Eunice Schonning Florence Rand Joan Beckman Mike & Pattie Beckman Mark Beckman Leslie Jo Morris Patricia Morris Eli Shapiro Stacey Shapiro Kelly Annette Mathias Dwinna Barker Jennifer Dean Tise Linda Barringer Kelly Annette Mathias Dwinna Barker Joy Rene' Patton Joyce Patton Kena Slinchak Pamela Slinchak Tamara Smitherman Ronnie & Betty Jo Smitherman The Gammel Family Virginia Hodge Susan Marie Schlenz Lawrence & Patricia Schlenz Julie Yeager Scheie Richard & Elizabeth Yeager Lynn McKeown Charles & Joan Bergdoll Michael Repsher Thomas & Valerie McCracken Jodi Augustine Bukky Carol Augustine Bam V. Gresset Beverly & Anthony Viloria Kellie Walker Puckett Richard & Ann Walker Andrew Hausheer Dr & Mrs Jeff Hausheer Amal Hakki Mohamad & Jasmine Hakki Vince A. Smith Nancy Smith Jennifer Funk Joan Funk Robb Gerken Jeannie & Larry Gerken Bradley Newman Michael & Sandra Coulson Matthew Farmer Darryll & Karen Farmer Rachel E. Lemisch James & Karen Lemisch Mindi (Anson) Weiner Doris & Richard Anson William H. Crow George & Lucille Crow Joanna Ellis - Monaghan William & Elaine Ellis Christian Van Dijk Sheri Pfeiffer Jeffrey Hillman Ralph & Susan Hillman Deborah Shilowski-Derderian Raymond & Kathleen Shilowski Lee Ann, Bob, & Alyssa Lopez Nancy Keister John Murphy Nora Murphy and Friends Janet Bogenschutz Lenny and Barb Bogenschutz Travis Graham Tommy & Judy Graham Have you ever told us your Reye’s Syndrome story? Are you a survivor? Did you lose someone close to you to Reye’s? Share your story with others, so they know they are not alone. Do you have a poem or book that inspired you, or consoled you? We would like to k now about it. We want to include your stories, thoughts and insights in future newsletters. Friends Lost Shirley Dettelbach Denise Wilson Willingham Louis D. Pettine Paul J. Chacho Eileen Cannell Roland Lafreniere Mr. & Mrs. Josh Billings John Murphy, Ireland If I should go tomorrow It would never be goodbye, For I have left my heart with you, So don't you ever cry. The love that's deep within me, Shall reach you from the stars, You'll feel it from the heavens, And it will heal the scars. - Anonymous Page 13 IN THE PALM OF HER HAND Julie Therese… a vibrant child who charmed everyone she met and dearly loved by her parents and two younger sisters…Karen, 8, and Meghan, 3. She seemed able to strike up a conversation with the oldest adult…and play on the level of the smallest child. I was Julie’s Girl Scout leader before Christmas in 1979 when our troop decorated a tree and sang carols for the residents at a local Piqua nursing home. One of the residents told Julie it would be her first Christmas ever without her family. And so, on that busy Christmas morning in the midst of toys, gifts and wrappings, it came as no surprise to me when she asked to bring flowers to her “new friend” at the nursing home…a gift for a special lady on Christmas Day from a very special nine year old girl. It would be our last Christmas ever with Julie. The winter of 1980 was uneventful for our family. I was oblivious to the fact that Reye’s Syndrome was devastating the lives of children and families all over the country. There were 548 cases of Reyes reported to the Center for Disease Control that year (113 in Ohio) with at least 107 deaths. Five deaths were reported in Ohio… But not in the news! I am chilled by the thought that one of them was Julie…now a statistic! July of 1980 came and Julie spent her usual week at Girl Scout Camp in Morrow, Ohio. While she was away, several children in town became ill with what appeared to be “just cold” symptoms…sore throats, low-grade fever. The swim meet scheduled for Karen was cancelled since so many swimmers were down with “whatever was going around”. And then Meghan developed a sore throat and fever. Aspirin, one and ¼ grain (80 mg.) per year of age every four hours for fever over 101 degrees was the standard at the time. I gave her two, chewable, orange flavored, Bayer Baby Aspirin. She recovered within 24 hours and Julie came home from camp. The following week Karen developed a fever of 102 degrees that remained elevated for a few days. On her birthday, July 25th, suspecting that it might be strep throat, I took her to our pediatrician for a throat culture which proved to be negative. “Just a simple viral infection”, I was told by the nurse on the phone. “Continue the aspirin and fluids and call if she is not better by Monday”. Karen, thankfully, recovered. Years later I learned that it was July of 1980 when studies done in Arizona, Ohio and Michigan suggested a connection between the use of aspirin with the initial infection (flu, chicken pox) and the development of Reye’s Syndrome. I cannot let go of the anger... my children were sick… and they knew! Where were the warnings? Julie was so active over the weekend catching up on her summer reading and swimming with her friends at the pool… I gave little thought to the fact that perhaps she would also catch this mysterious summer virus. But on Monday morning, July 28th, as we headed out for swim team practice, Julie asked me to drop her off at the library. “I don’t feel good and if I’m going to be sick, I want plenty of books to read.” Even now…I am sickened by the thought of what happened next. I can see her standing in the kitchen while I placed one adult aspirin (325mg) and two “baby” aspirin in the palm of her hand. Was it all a dream? No, it was a mother’s worse nightmare. I gave her a substance which would be toxic for her. It was the first day of the last week of my beautiful daughter’s life. By Wednesday morning Julie had recovered and my thoughts turned to preparing for house guests. Mary, John, and their children, Leah and Jason were scheduled to arrive late Thursday. Julie was very excited since she had not seen her friend Leah, 10, since she had moved to Michigan. But something still wasn’t quite right with Julie. We went to MacDonald’s Wednesday evening and she said she didn’t feel like eating. No nausea or stomach pain; just no appetite. No appetite for MacDonald’s? Surprised and feeling somewhat anxious, I brought her home and she went to bed before the sun went down. Julie’s malaise continued through Thursday but she was up to greet Leah when the family arrived Thursday night. They trotted off together, Karen trailing along, to the girl’s bedroom where we could hear the sounds of their chatter and laughter drifting through the house. Thank God…she seems to be OK. You are definitely a nervous Mom. Just calm down. Friday, August 1st. The girls were up bright and early making plans for the day. Julie, at last, ate a good breakfast of French toast; her favorite. I drove Karen, Meghan and Jason to the pool. Karen was scheduled for her last swim practice before the championship meet in Coldwater, Ohio on Saturday. And I knew the younger children would have fun in the “baby pool”. Meanwhile, Mary took Julie and Leah to the mall for haircuts…much to their delight! Life had returned to normal… the weather was hot but it didn’t matter… I knew it was going to be a great weekend. It was noon and I was in the driveway unloading wet suits, towels and pool toys when Leah came running out of the house. “Julie threw up in the beauty shop!” she yelled. I found her in her room reading in bed. “Are you OK? What happened?” I asked. She explained that she “just threw up”; on the floor. She didn’t know she was about to be sick and couldn’t make it to the restroom. Her tummy felt soft to touch. She did not complain of pain or cramping. No headache, but very thirsty. I brought her ice chips… and waited, almost prayerfully, for the diarrhea to begin. Later, Mary said that Julie had vomited “suddenly and forcefully” at the mall. It continued that way for the next six hours, frequently and relentlessly, until the vomiting was reduced to nothing but dry heaves. At 8:00 P.M. I called our pediatrician at his home. He said it was most likely a severe gastroenteritis and warned that it would probably “go through the whole family”. And our house guests, too, I thought! “If she continues to vomit, bring her to the office in the morning”. In retrospect, I wish he didn’t have Saturday morning office hours. If only we had just brought her directly to the emergency room. The first of a long list of “if only’s” had begun. Page 14 In the Palm of her Hand continued… It was a long night. Julie climbed into bed with me. But she was restless and occasionally tip-toed to the kitchen for more ice. The vomiting appeared to have ended. At about 5:00 A.M., now Saturday, she asked to go out to the couch in the family room. I followed and noticed that she seemed to stagger a little as she walked down the hallway. Across the room, through the glass sliding doors, I watched a beautiful sunrise. When I called her attention to it, she looked at me groggily and in an irritable voice said, “I don’t want to look at the sunrise.” And then, “Mom, I want Leah to leave…” Dear God… Something is terribly wrong with Julie, I prayed. This is not happening! A few minutes after 6:00 A.M., Karen and her Dad walked through the family room ready to go. Of course, the swim meet… how could I forget? “I’m worried. I’m taking her to see Dr. C. at nine o’clock” I told him. I wished Karen luck and Julie murmured, “Have fun, Karen”. Bill, always the optimist, reassured us that Julie would be just fine. Of course, she’s going to be fine. She was sick to her stomach…probably something she ate. Dr. C. will wonder why you ever brought her in… Julie was quiet on the way to see the doctor. She didn’t even want to bring along her book that she was reading from the Boxcar Children series. But she begged me for water. Certain now that the vomiting was over, I gave her a full glass. “Much better”, she smiled. When we arrived, she threw up in the parking lot. Clear liquid. It was with difficulty she walked into the doctor’s office. For the first time, Reye’s Syndrome flashed through my mind. But I quickly put that one to rest. No…it’s summer. This cannot be the flu. And she had chicken pox in 1978…during the blizzard. “Hello, Julie! Give me five!” Julie responded with her good-natured high five. She knew that he would make her better. She loved Dr. C. and he had always made her feel better…usually within hours. He quickly began to examine her…no fever, abdomen soft and non-tender, neuro exam unremarkable. He looked at me and quietly stated “I know what you’re thinking, Mom. It is not Reye’s Syndrome!” He couldn’t know what I was thinking…but now I knew what he was thinking. At the time, however, I did not know that a blood test for ammonia levels and liver function was available to help with a diagnosis. But he did. Strange, I thought, he told me to call him at 6:00 P.M…one way or the other. He sent us home with a prescription for a Tigan suppository…an antiemetic that would help her stop vomiting. The pharmacist seemed reluctant to give it to a child and called the doctor’s office to confirm his choice of medication. At 12 noon, after a struggle to help Julie, now stumbling and holding onto the walls, I got her back to bed and gave her the suppository. Again, I learned a few weeks later that the FDA had issued a warning that anti-nausea drugs such as Tigan should be avoided with vomiting in children since it may mask the symptoms of Reye’s Syndrome or increase it’s severity. By two o’clock on Saturday afternoon, Julie’s condition was rapidly deteriorating. She became extremely restless, confused and disoriented. When she complained of “black spots in front of her eyes”, I ran to the telephone and called the doctor. He said he would meet me at Children’s Medical Center. How could I get to Dayton? Could Mary stay with the children? Could I get her there alone? What if she dies on the way? I struggled to get her out of bed and on her feet. She was so lethargic and didn’t want to get up. Somehow, I got her into the hallway. I looked up and there was her Dad coming toward us. He picked her up and put her into the back seat of the car. As we pulled away I glanced back at the house. Karen and Meghan were standing and waving on the front porch. It was the last time they ever saw their big sister alive. On that hot Saturday afternoon, August 2, 1980, confusion reigned at the Children’s Medical Center in Dayton, Ohio. There had been a rash of admissions to the emergency room and it was more than two hours before Dr. C. was advised that his patient was there. During that time Julie became more incoherent and couldn’t even tell me her name. A young resident shocked me when he asked if she might have somehow obtained “drugs”. Julie was thrashing about in the bed and was so uncooperative that the nurse had to restrain her to draw blood and start an IV infusion. Her behavior was so uncharacteristic of the little girl we knew and loved. At one point she even bit my hand. I remember that suddenly Dr. C. appeared at the foot of her bed. He said nothing, turned away and left the room. It was no more than ten minutes before Dr. C. returned accompanied by another doctor dressed in casual clothes. He introduced us to Dr. Steve, a specialist in gastroenterology, who recently came to Dayton from Emory University Hospital in Atlanta. He quickly examined Julie and asked if I had given her aspirin. Confused by the question I answered, “Not since last Monday…for her sore throat and fever”. He then said that he had the results of the blood work and she had Reye’s Syndrome. I backed away…so stunned by those words he might as well have hit me with a baseball bat. The illness I knew killed a number of children in Michigan two years ago. The illness that is so rare I believed it could never happen to one of my children. Aspirin? ASPIRIN? What did aspirin have to do with it? Terrified, I watched as they rushed her to ICU. Time stood still. It was an eternity before Dr. Steve came out to the waiting room. He was cautiously optimistic and explained that she was in Stage II… but was not in coma. She was receiving mannitol, a drug to reduce the swelling in her brain and carefully regulated IV fluids to keep her hydrated. At present he did not feel it necessary to insert an intracranial pressure monitor. The nurse told us that we could not stay with her as she might become more agitated. We could visit for ten minutes on the hour, every hour. But she must be frightened. I wanted to see her, comfort her, love her. How could I possibly “agitate” her? We stretched out on the couches and waited…each interminable hour. At five o’clock on Sunday morning, August 3rd, my restless sleep was disturbed by a clap of thunder. I hurried to the intercom and asked to see Julie. When I entered the unit I was devastated by what I saw and heard…a rasping sound from her throat…large, fixed and dilated pupils…decerebrate rigidity. The nurse was across the room. I called to her for help. On Monday, August 4, 1980 at 6:00 P.M., one week after the onset of a mild viral infection, Julie was removed from life support. In the twenty minutes that her heart remained beating, I placed my hand in the palm of her hand. I told her that when I let go, her grandmother would be there to show her the way to God. And He would forever hold her in the palm of His hand. Page 15 BRIEF BUT BRIGHT... This story is about a boy whose flame was brief, but bright. His name was Donny and he was seven years old. Donny attended a private Christian school and at this young age he already had an enormous love for God and his family. He had beautiful blue eyes and a heart as big as they come. Donny was the oldest of the children and although he was so very young, he was his mother’s rock. She did not understand the extent of his faith and strength until later. Donny’s mother hemorrhaged while giving birth to her third child and had to have a blood transfusion after the delivery. When she found out that she was expecting again (fourth child), she learned that the blood transfusion that had saved her life when delivering her third child, had an antibody that would cause severe anemia in the fetus she was now carrying. Donny’s parents were frightened and sad. However, the doctor shared that unless the baby’s father had the same antibody as the blood donor, there would not be a problem. They were hopeful because only one out of ten men had this antibody – so the odds were with them that the baby would be healthy. Unfortunately this optimism did not last because the baby’s father’s blood test showed that he did have this same antibody. The doctor told Donny’s mother that her body would try to abort the baby in the second trimester and most likely she would not carry the baby to term. Donny’s mother took monthly blood tests to determine the status of her condition. A few days later, she would call to get the results and every month she was blessed by the good news that she and her baby were holding their own. After a very long and anxious pregnancy, Donny’s mother was finally in her ninth month. The doctor was very optimistic about delivering a healthy baby – it looked liked they had beat the unlikely odds. Two weeks before the baby was to arrive, Donny developed the stomach flu and missed a few days of school. He would start to feel better and then start vomiting again. This illness was not unlike many other bouts of flu that Donny’s mother had experienced with all of her children. During his illness, Donny’s mother went to his school for a teacher conference and to pick up the assignments that he had missed. The teacher asked her how was she doing and if everything was now safe for the baby. Donny’s mother was surprised by the teacher’s questions, as she had not shared this information with her. The teacher added that she knew about her condition because Donny asked his classmates to pray for his mother and the baby everyday during the entire pregnancy. Donny’s mother smiled because now in her ninth month, she knew the children’s prayers had been answered. Six days later, Donny was still vomiting off and on when his mother decided to take him to the doctor to be sure that he was not getting dehydrated. The doctor stated that he just had the flu, but to continue to watch for dehydration. The doctor prescribed some suppositories (Tigan) to help slow down Donny’s nausea and said this would help him rest. Donny’s mother was relieved because they were both very tired from a very restless week. Donny was given one suppository that morning, as directed, and was put to bed to rest. This assurance by the doctor was short-lived because Donny became very irritable and combative as the evening progressed. Donny got out of bed yelling and clawed at the carpet. His mother had to hold him down because he was fighting and trying to bite her. The boy with a heart of gold had become an animal. Donny passed out and his parents wrapped him in a blanket and rushed him to the emergency room. The ER staff was not sure what was wrong with Donny and suggested that they fly him to the nearest children’s hospital. Donny’s parents had to drive to this hospital because they were not allowed to fly with him in the helicopter. Although the miles were not many, the drive was a lifetime. The doctor at the children’s hospital examined Donny, who was still unconscious. He told the parents that “they would have a new boy in the morning”, he just needed to sleep off the medicine that he had been given for the nausea. The doctor stated it was too large of a dose for his age, but that he would be fine. Fine did not happen. Donny never regained consciousness. Almost 36 hours after Donny was taken to the emergency room, this seven year old boy who just had the stomach flu, was declared brain dead. The doctors had tried to control the swelling in his brain, but they never understood what had caused it. Donny’s parents had to make the hardest decision of their lives – take him off the machine that was keeping him alive (breathing). Donny’s parents were later told that it appeared Donny had Reye’s Syndrome, an often misdiagnosed condition that is rare, but often fatal if not treated immediately. Donny’s mother had her last doctor’s appointment with the obstetrician before her scheduled c-section the day following his death. Her doctor came into the exam room with a puzzled look on his face, as he held the results of her final blood test which was taken the previous week. The doctor stated that he did not understand it, but the antibody that they had been watching so closely throughout her pregnancy was no longer evident. It was gone and he had no answer as to why. Donny’s parents looked at each other and with tears streaming down her face she told the doctor she knew why. She shared that her son, who was now in heaven, prayed for the good health of his soon to be sibling. Donny’s mother delivered an 8 pound 3 ounce healthy baby boy the following week. The child, who was never supposed to thrive in his mother’s womb, came to this family at a time when they desperately needed a blessing from above. Many years and memories later, Donny is still very much in his mothers heart. His flame was brief, but bright. Page 16 Louis D. Pettine 1941 – 2009 “Three grand essentials to happiness in this life are something to do, something to love, and something to hope for.” - Addison Louis Pettine is the embodiment of this little quote. Something to do; where does one start? Lou was a retired Southeastern Regional Transit Authority Administrator, community leader and volunteer, who spent most of his life helping others. A 1966 Bryant College graduate, he was a Co-Founder and past President, Vice President, and Trustee for various Reye’s Syndrome Chapters and Organizations. Before his death he was a member of the Fall River Country Club, Elks, and Westport Yacht Club (past treasurer). He is a former member of: MA Assoc. of Regional Transit Administrators, B.M.C. Durfee High School Parents Advisory Committee (past President), James Tansey P.T.O. (past Treasurer), American Division of Little Leagues (past Vice-President), Commission for Homeless (past Vice-Chairman), Mayor’s Neighborhood Task Force, Milliken-Silva Basketball League Scholarship Committee (past Chairman), National Assoc. of Foster Grandparent Directors, Fall River Alcoholism Council, and Community Housing Resource Board (Chairman, Personnel Committee). He also found time to coach Little League, PAL Girl’s Softball and be a candidate for the Fall River City Council. Something to love; back in the mid 1970’s when so little was known about Reye’s Syndrome, Louis, and his wife Susan, lost their 4 year old son Michael, to Reye’s Syndrome. When Michael became sick and ended up in the hospital, they could not believe nor understand what was happening. They could not believe there was no known cause, or cure, or proven treatment for Reye’s Syndrome. They were shocked to learn some families lost more than one child to Reye’s Syndrome. When informed there were no known parents to talk with whose children had suffered from Reye’s Louis and Susan realized how truly alone they were. They were beyond frightened and frustrated at, not only their own helplessness, but at the apparent helplessness of the medical professionals. While angered so little was known about Reye’s, they were also petrified it could strike out at their remaining two children. Out of their love for Michael, their two remaining children, Jeff and Amy, and millions of other children, Louis and Susan were determined to do something. They wanted other children to have a better chance of surviving. They needed to find a way to educate parents, doctors, nurses and medical professionals, seek funding for research to find a cure, and to create a network where parents dealing with the loss of a child due to Reye’s Syndrome could come together and share their grief. Something to hope for; 24 hours after the Pettines buried their son, John Dieckman’s son, 775 miles away, began to manifest Reye’s Syndrome symptoms. Judith and Jim Crawford’s son was also a Reye’s Syndrome patient in the same hospital. Both boys lost their lives to the disease. The Crawfords traveled to Boston a month later, and while there, began to ask questions about Reye’s Syndrome. They were directed to another young parent in the area; Lou Pettine. Lou and Jim agreed to begin working on ways to stimulate public awareness of Reye’s Syndrome. Jim said he knew of one other Reye’s Syndrome parent who might be persuaded to join the effort; John Dieckman. Together, Pettine, Crawford, and Dieckman became 3 founding trustees chartering in Michigan the Reye’s Syndrome Association, in 1976. In 1985, the Michigan Foundation merged with the National Reye’s Syndrome Foundation chartered in 1974 in Bryan, Ohio. Lou would travel all over, helping other parents form groups to promote awareness, and create funding for Reye’s Syndrome research. His most beloved role with the Foundation was being there for other parents as they stood helpless while their child battled Reye’s Syndrome. Lou’s other role in the Foundation was to obtain the largest amount of awareness exposure through newspapers and publications, and to assist in advising the public regarding this effort. In addition, he was responsible for handling all financial aspects relative to expenditures of proposed activities. He also crusaded for, and was successful in, having a law passed in Massachusetts requiring the reporting of Reye’s Syndrome cases to the Centers for Disease Control in Atlanta, Georgia. Something to do, something to love, something to hope for…. Louis’ ceaseless promotion of Reye’s Syndrome awareness saved millions of children’s lives over the past 33 years, and the monies he helped raise funded vital research that linked aspirin products to Reye’s Syndrome. He helped lay the foundation for the Reye’s Syndrome warning label to be added to all aspirin products. Louis was blessed, and we were all the better for his being here among us. He will be missed. Shirley Dettlebach Shirley Dettlebach and her husband Marvin were both staunch supporters of the National Reye's Syndrome Foundation, and active participants since first learning of the Foundation in the 1980's. Shirley and Marvin owned several McDonald franchises in Northwest Ohio, and were responsible for several large grants to the NRSF from both the McDonald Corporation and from Ronald McDonald Children's Charities. Grants that funded the annual Superintendent's Mailing in 1992, which sent Reye's Syndrome literature to 16,500 school districts Nationwide. Grants were given to develop brochures and PSA's about Reye's Syndrome, all supported by Shirley and Marvin Dettlebach. Although the couple's children were not affected by Reye's Syndrome, they felt passionately about Reye's Syndrome Awareness and Research programs. Marvin passed away a few years back, and Shirley passed away in February of 2009. She and Marvin both will be missed. “Every parent who loses a child to Reye’s Syndrome wants to know why their child died, and what could have been done to prevent their child’s death. Lou didn’t get the pleasure of knowing a cause and a cure for Reye’s had been discovered before his death,” says his wife, Susan. “I’m hoping the cause, cure, and maybe prevention of Reye’s Syndrome will be found in my remaining children’s lives.” Page 17 MY BROTHER JOHN... My brother, John LoCascio, was a great kid. He was a Boy Scout, altar boy, interested in the Civil War, and liked to build models. He was very compassionate and wise beyond his years. (He was 15 1/2 years old) On November 19,1977,Reye's Syndrome claimed his life. It started as a virus. My mom kept him home from school. She gave him Jell-o and no aspirin, but he seemed to get worse, On Tuesday, Nov. 15,he was admitted to Columbia-Presbyterian Hospital in New York City. By Thursday, Nov. 17, an operation was performed to remove the frontal cranium as the brain needed room to expand. Our doctor, told us it was Reye's Syndrome, which I had read about the previous year. I knew the prospects were not good, but I prayed for a miracle. John passed away on Nov. 19, 1977. Not a day goes by that I don't think of him or what might have been. It was a great loss for our family and we support the NRSF in the hope one day a cure will be found. Submitted by John’s sister; Connie Quigley. The funeral for John was one of the worst things a family has to endure. My last memory of John was at the hospital, seeing him on a block of ice to keep his body cool and his head was bandaged. This was shortly before his death. We received lots of love and support from family and friends and our high school had a memorial service for him. It was beautiful. There is really nothing to add except to spread the word about Reye's. I wear the pin and hand out brochures to people who ask about it. After so many years, many still do not know about Reye's Syndrome. Let us put an end to this medical mystery! This is just one of the many, many moving and heartfelt stories submitted to the NRSF by parents, grandparents, siblings and loved ones. These stories also appear in our 35 Year Commemorative book, now published and available for order. A sneak peek at some of the pages follows. The book is broken out into 3 main areas; Awareness, which encompasses all the people, places and events that created Awareness across the United States over the past 35 years. Research; Every bit of research and each researcher is a part of this section of the book—both biographies and Research Papers published are all here. The third section of the book carries the heart through the stories submitted by parents, grandparents, siblings and loved ones of Reye's Syndrome victims. Lastly, the final pages pay tribute to any and all whose life was touched by Reye's Syndrome. The book will have an ISBN and will be copyrighted and housed in the Library Page 18 IN THE NEWS... POSSIBLE NEW TWIST IN REYE'S SYNDROME CASES IN REGARD TO H1N1? In conversation with a CDC representative early in November, 2009, it was noted that “the situation with Reye’s Syndrome today is fortunately strikingly different from the 1970s and early 1980s when we experienced clear outbreaks of aspirin-associated cases of Reye’s Syndrome in temporal association with increased influenza activity.” The CDC representative further stated that between the NRSF’s and the CDC’s initiative to get the word out about not treating children with influenza-like illnesses with aspirin has gotten out to health care workers and the public “even if many do not necessarily understand the rationale behind this message.” hearing of clear aspirin-associated Reye’s Syndrome cases.” There was a report from Minnesota about a "Reye’s Syndrome-like" illness in a child who did not have a history of salicylate exposure, along with one child in Illinois, and one in Indiana. None of the children survived. Reports of Reye's Syndrome following H1N1 have been reported to the Foundation from other countries such as France, Italy, Great Britain, and Indonesia. In France, we are told, the doctor actually prescribed aspirin for the child’s fever. “The influenza branch folks here at CDC who are monitoring influenza-related deaths in children are A MORE VIRAL STRAIN OF H1N1 BEING SEEN ABROAD? The World Health Organization’s website reported on November 4, 2009 that according to the Ministry of Health of Ukraine, the country has now recorded more than 250,000 cases of influenza-like illness, with 235 patients requiring intensive care. As of 2 November, 70 deaths from acute respiratory illness have been reported. As the pandemic virus has rapidly become the dominant influenza strain worldwide, it can be assumed that most cases of influenza in Ukraine are caused by the H1N1 virus. At the request of the government, a multi-disciplinary team of nine experts has been deployed by WHO and arrived in Kyiv November 3rd. Team members will now begin field investigations to characterize the clinical and epidemiological features of the outbreak. Many questions remain to be answered. The outbreak in Ukraine may be indicative of how the virus can behave in the northern hemisphere during the winter season, particularly in health care settings typically found in Eastern Europe. Given the potential significance of this outbreak as an early warning signal, WHO commends the government of Ukraine for its transparent reporting and open sharing of samples. In addition, the World Health Organization predicts two more waves of flu, including the bird flu, are expected in Ukraine. Other news services in the region are reporting that borders have been closed, as have schools and all public functions where groups would gather. The news services are reporting hemorrhagic pneumonia deaths associated with H1N1, and some news services are reporting high death rates. In the United States, as well as other countries, we are seeing the H1N1 transmission from human to animal, a ‘jumping of species’ with this H1N1 influenza. For more information you can visit the WHO website at www.who.int and www.cdc.gov. A S P I R I N M I S U S E L I N K E D T O 1 91 8 PA N D E M I C D E AT H S ? Is it possible that high doses of aspirin prescribed to treat patients during the 1918 influenza pandemic may have actually increased the number of deaths? Author Karen Starko states “The high case fatality rate especially among young adults…is incompletely understood. Although late deaths showed bacterial pneumonia, early deaths exhibited extremely 'wet,' sometimes hemorrhagic lungs.” She goes on to suggest that high dose aspirin may have contributed, explaining that physicians of the day were not aware that aspirin regimens in the 8g to 31g per day range are associated with hyperventilation and pulmonary edema in 33 percent and 3 percent of recipients. “Recently, pulmonary edema was found at autopsy in 46 per cent of 26 salicylate intoxicated adults. Experimentally, salicylates increase lung fluid and protein levels and impair mucociliary clearance.” Starko cites the US Surgeon General’s recommendation of aspirin use just before a spike in the number of deaths in 1918, and adds that if this advice was followed “and if pulmonary edema occurred in 3 per cent of persons, a significant proportion of the deaths may be attributable to aspirin.” List of common drugs being made in China; Aciclovir – (Zovirax) Advair Adrenaline Hcl Alfuzosin – (Uroxatral) Allopurinol Alprazolam – (Xanax) Amikacin Sulfate Aminophyline Amiodarone Hydrochloride Amlodipine Ampicillin Amoxicillin Aspirin Atropine Avandia Budesonide Captopril Cefixime Carnosine Carbamazepine Cefotaxime – (Claforan) Cephealexin – (Keflex, Keftab) Chloramphenicol Chlorpheniramine Maleate – (Chlor-Trimeton, Piriton) Cilexetil – (Atacand) Clopidogrel Bisulfate – (Plavix) Co-trimoxazole – (Septrin, Bactrim) Cytisine – (Tabex) Enalapril – (Renitec, Vasotec) Ibuprofen Lamictal Lipitor Loratadine (Claritin, Lomilan, Clarinase, Alavert, AllergyX) Nitroglycerin Ondansetron – (Zofran) Paracetamol Penicillin Prednisone Propranolol Zantac Salbutamol Valtrex Trimethoprim Tamoxifen Sulfamethoxazole Sucralfate – (Carafate) Ribavirin – (Copegus, Rebetol, Ribashere, Vilona, Virazole) Propecia Promethazine Hydrochloride – (Phenergan, Romergan, Fargan, Avomine) Phenformin Hydrochloride Paclitaxel Oxybutinin Oxandrolone Nifedipine (Adalat, Nifedical, Procardia) Moexipril – (Univasc) Metronidazole Mycophenolate Mofetil Norfloxacin Ofloxacin Lovastatin Letrozole Glyceryl Trinitrate Glibenclamide (Diabeta, Flynase, Micronase) This is not a complete list. Page 18 TALK ABOUT CONFUSING HEADLINES…. ... 80 percent of drugs sold in the US include ingredients from China, India and other countries - anything from aspirin to antibiotics. ... Most people do not realize that in the USA, Aspirin kills just as many people per year as Heroin... Taking aspirin once a year could reduce your chance of developing stomach cancer, according to researchers... Investigation suggests that aspirin may one day help treat liver damage... American Heart Association recommends Plavix therapy instead of aspirin therapy for those heart... Aspirin does not reduce the risk of breast cancer in pre-menopausal ... One-hundred mg of aspirin was not effective for the prevention of type 2 diabetes in otherwise healthy, American women ... Researchers looked carefully at the results of all the studies and found no good evidence that aspirin helps prevent strokes in people who have already had ... Aspirin will make your migraine headache better. If your headache is severe, it will reduce the pain but may not get rid of it ... Humans form their own version of aspirin's active principle, known as salicylic acid, when the drug breaks down in the body. ... Prostate specific antigen (PSA) levels are lower in men who take aspirin, according to findings presented at... He mentioned the popular Paracetamol and Aspirin tablets as not always too good for the relief of pains... My doctor advised me to take aspirin every day to prevent a heart attack or stroke, but a recent report suggested it didn't work. ... Carriers of Lynch syndrome assigned to aspirin, resistant starch or both for up to four years had no decrease in the likelihood of developing colorectal ... Aspirin hardly works for anybody. Antibiotics are just as effective as placebos. Insulin doesn't affect diabetics. If you've tried the method faithfully and ... If you've had too much to drink, sleep will help repair the damage you've done to your body. Also, taking two aspirin when you go to bed and when you get up ... Long-term, low-dose aspirin does not prevent the development of clinical type 2 diabetes in initially healthy women, according to the ... A quick and easy fix but make sure you take them in moderation and be aware that aspirin and ibuprofen may upset your already delicate stomach. ... Aspirin does not last all night. True Facts. Also, it slows the metabolization of alcohol, which means you just stay drunk longer. ... More than half of the dangerous drug combinations included the use of aspirin or blood thinners such as warfarin... Half of the drug interactions involved over-the-counter medications like aspirin or dietary supplements... Some people use aspirin in water for their live Christmas trees, but pet owners should beware of this tradition. Just drinking the water is bad for pets, ... A large study out of Scotland has shown that aspirin and antioxidant supplements are ineffective in the primary prevention of heart attacks... A Creighton University researcher has found that Aspirin does not provide protection against a form of colorectal cancer named after him, Lynch syndrome. ... A recent study found that acupuncture was more effective for treating chronic headache pain than aspirin. ... Stomach ulcers caused by aspirin and ibuprofen are common causes of a GI bleed... Low-dose aspirin has been shown to decrease stroke risk in women over 45 and may prevent migraines too... Your pet's life and health could be at risk from drinking aspirin-laced water... Aspirin a day may not keep heart attacks away... Daily low-dose aspirin did not reduce the risk for cardiovascular events in patients with type 2 diabetes compared with patients who did not receive aspirin ... Aspirin could treat prostate cancer - or just mask symptoms... Low-dose aspirin may not reduce CV events risk in diabetics... Routine use of Aspirin or ibuprofen could cut the likelihood of developing breast cancer... Aspirin May Not Be Protecting You From A Heart Attack... An aspirin a day won't keep a heart attack away - unless you've already survived one, according to doctors ... Diabetics who take aspirin to prevent heart attacks could be putting themselves at a heightened risk for internal bleeding, a new study suggests. ... Two more ways to reduce colon cancer risk: vitamin D and aspirin... A daily aspirin taken to ward off heart attacks could do more harm than good, researchers warn yesterday... Another commonly used medicine that may help prevent skin cancer (as well as others) is aspirin... Aspirin has not been proven to protect the heart in healthy women younger than 65 years of age... Aspirin can cause metabolic acidosis, a condition which can lead to coma and death... Aspirin has been shown to prevent atherosclerosis, however, the mechanisms of action have remain a mystery... Research shows aspirin can stop early cancers developing... Foods containing salicylates may trigger symptoms in people who are sensitive to aspirin. ... An aspirin-like drug discovered 132 years ago may prove to be a powerful weapon against type 2 diabetes... For some persons known to have asthma, taking aspirin precipitates bronchial spasm… Aspirin is no wonder drug say experts... What -is- this drug they call Aspirin? Why so much controversy? Why so many contradictions? Why so many headlines? “Aspirin is no wonder drug say experts…” Reading this confusing and contradictory list of headlines leads one to wonder why this drug is not regulated and doled out by prescription only…. And now it is coming to us from China, India, and other 3rd World Countries? What’s gone wrong here? NATIONAL REYE’S SYNDROME FOUNDATION PO Box 829 Bryan, OH 43506 NON-PROFIT ORG. U.S. POSTAGE PAID PERMIT NO. 197 BRYAN, OHIO 43506 M EMBERSHIP F ORM Fall 2009 If you haven’t become a member of the National Reye’s Syndrome Foundation and would like to, simply fill in the following information, designate your membership level, along with your membership fee and mail it to; NRSF, PO Box 829, Bryan OH 43506-0829 or pay online using your Visa or MasterCard at www.ReyesSyndrome.org Name Address Annual Levels of Membership: City State & Zip Code Email Address Phone Individual / Family Membership $25.00 Leadership Membership $50.00 Century Membership $100.00 Patron Membership $200.00 Lifetime Membership: Made in Memory Of: Made In Honor Of: Lifetime Benefactor $500.00 Lifetime Guardian $1,000.00 Please make your check or money order payable to NRSF. Your Membership Card and acknowledgement of your gift will soon be forwarded. We Thank You for Your Support!
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