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Who We are: National Reye's Syndrome Foundation


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This presentation tells the reader who we are, how we began, and invites your participation.

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Who We are: National Reye's Syndrome Foundation

  1. 1. a Special Invitation from the REYE’S SYNDROME
  2. 2. In Memory…Pictured above are just a handful of the precious children wholost their lives to Reyes Syndrome. We say, “No More! Not One More Child!” Stand with us! Join us and say, “No More!”
  3. 3. You are Invited The National Reye’s Syndrome Foundation invites you to join an elite membership whose mission is to eradicate the incidence of Reyes Syndrome. We invite you to join an elite membership who cares about saving children’s lives. We invite you to be the Champion of Children we know you are. We invite you to join us as a Member of the National Reye’s Syndrome Foundation. Join Us! Let’s make history together as we eradicate the incidence of Reyes Syndrome!
  4. 4. From the President’s Desk Dear Donor, The mission of the National Reye’s Syndrome Foundation is to eradicate the incidence of Reye’s Syndrome. We are a registered 501(c)3 charity, established in 1974 as a children’s health advocacy organization. Our mission touches every single child born today. It has to. We absolutely can not allow this disease, which has no cure, to victimize our children! With your help, and with your support, Reyes Syndrome Awareness programs canBoard of Directors: continue forward, and one day we will eradicate this killer of children.John E. FreudenbergerPresident What is Reye’s Syndrome?Larry M. Lasky Reye’s Syndrome is mysteriously triggered in children after flu, chicken pox,Vice President and other viral infections, seriously affecting the brain and liver. The diseaseRobert McKeown attacks children between the ages of birth to about 19 years of age.Treasurer We are not a large organization like the Cancer Society or DiabetesTerri J. Freudenberger Foundation. We are a small organization with a large goal, who, for 37 years,Secretary has provided Reyes Syndrome Awareness Programs, Reyes SyndromeMarianne Piemonte Research, and Counseling and Assistance to families who have suffered theAspirin Committee Chair trauma of Reyes Syndrome.Thomas H. Glick, M.D.Chairman, Scientific Advisory The National Reye’s Syndrome FoundationBoard My wife, Terri, and I founded the National Reye’s Syndrome Foundation inTrustees: 1974 right after we lost our precious 5 year old daughter to Reyes SyndromeBarbara A. Bogenschutz on Palm Sunday in 1973. At the time, we had no idea what Reyes SyndromeJames F. Johnson was. Many doctors didn’t know what Reyes Syndrome was. Someone had toBarbara A. Ortiz step up and try to prevent this disease from happening to other children. WeStephen PummShirley Rice took on that challenge, and to this day, we continue to guide the Foundation in its quest to eradicate the incidence of this horrible children’s disease. National Headquarters 426 N. Lewis Street In the pages that follow, you will be introduced to some of our Awareness Programs and how they have been life savers. You will learn a bit about our PO Box 829 history, and our commitment to children. Bryan OH 43506 Although a small organization, we accomplish great projects year in and year out. We invite you to join us as a donor; as a Champion of Children. Toll Free: 1-800-233-7393 Every $100.00 you donate reaches 1000 children. How many children’s Direct: 419-636-2679 lives would you like to save today? Email:nrsf@ReyesSyndrome.Org As one philosopher stated; “The great use of life is to spend it for something Website: that will outlast it.”www.ReyesSyndrome.Org Join us. Help us continue the mission of eradicating Reyes Syndrome. John E. Freudenberger President Aristotle said, "I did not give it to the man, but to humanity." www.RSGifting.Org
  5. 5. Teaching Tweens & Teens the Danger of Self MedicatingMy son Michael developed Reyes Syndrome in 1980, following a bout ofChicken Pox. I feared Reye’s since several children in our city died from itthat same year, so I was aware, at least, that it existed, through readingtheir obituaries. Thank goodness I was. When he began vomiting, I calledour pediatrician, who also had some experience with Reyes. She asked meto keep a check on him, note symptoms, and call back in several hours. Idid...we went to the ER on the doctors orders, and hours later, weretransported to St. Christophers Hospital, 60 miles away. Michael survived.Today, many parents can learn about Reyes without the only source beingobituaries. Pediatricians are better informed and the National ReyesSyndrome Foundation has done a fine job of educating the public. Iunderstand there is a push on by the Foundation regarding the issue ofteens and self-medicating. The Foundation’s job is far from over it seems,and it wont be until every parent is aware of Reye’s and the symptoms.Valerie McCracken, Easton, PAYes, the Foundation has taken on the project to Teach Tweens and Teens the Danger of Self-Medicating. It is a serious conversation. Desperate emails and phone calls from parents and schoolnurses validate the Teen Self-Medicating problems we are seeing more and more of today. 41 percent ofteens mistakenly believe that abuse of OTC medicines is less dangerous than abuse of illegal streetdrugs, and most report that prescription drugs are easier to get than illegal drugs!The best protection we can provide is to talk with our teens and tweens. Educate them. Teach them toread warning labels, teach them to investigate side-effects, teach them to talk to a parent or a medicalprofessional before taking that pill, teach them to be cautious.Someone needs to take this issue in hand and create a program that can reach out to our Tweens &Teens, and that is just what we are doing.We are developing a website, in-house, at to provide education and materials toteens, tweens, parents, school nurses and medical professionals. There is still much to be done on this site so it becomes appealing to our teens and tweens, and we invite you to Champion Children by contributing toward the development of this site, and or the creation and printing cost of brochures and other related educational materials to raise awareness about this important issue. Display it Proudly:
  6. 6. 136,000 Annual School Packages Keeps Kids SafeDear NRSF,I have been a school nurse in southern California for the past 15 years andit never ceases to amaze me how misinformed some parents are. I stillhave to correct students who want to call their parents for aspirin. I alsoinstruct parents who sometimes tell me that they will bring or have giventheir child aspirin. I always use this opportunity as a teaching moment toremind parents that children under the age of 19 should NEVER take aproduct containing aspirin.Many of our student are not covered by health insurance and do not haveany regular health care. Some of our parents to do not read or understandEnglish, and some have low cognitive functioning. I just wanted to thankyou for providing Reyes Syndrome information I can hand out and use toteach from. Thank you.Nikki Williams, RNSchool Nurse,Westside Union School District, CaliforniaYou are most welcome, Nikki! We’ve been sending packages of Reyes Syndrome information to schoolsfor the past 32 years!The Foundation now contacts more than 136,000 schools across the United States and its Territoriesevery year with a special Reyes Syndrome Information Package.Handouts to parents include the information in both English and Spanish, and in easy to read andunderstand formats.We know you work hard to keep your students safe, and we are right in there with you, doing whateverwe can, year in and year out, to protect children! Your annual donation of $500.00 or more will help us offset the cost of this yearly mailing to 136,000 schools. You will know that you have reached millions of families with life saving Reyes Syndrome information every year. That new plaque on your wall will say it all: You are a Hero; a Champion of Children! Display it Proudly:
  7. 7. Too low they build who build below the skies…. I am a family practice physician who cares for infants, children, adolescents and adults. Patient education is my number one goal. As I am only able to spend a small amount of time with patients in comparison to the rest of their day, I rely heavily on the accurate information that is available to patients from outside sources in order for them to make wise decisions regarding over the counter medications and supplements. All day long I find myself recommending the National Reye’s Syndrome Foundation’s websites at www.ReyesSyndrome.Org, and the blog at to parents, grandparents and caregivers of young children. Thank you for all you do in assisting me in educating my patients. Dr. Nancy L. Reye, MD Indiana University Health, Bloomington, IndianaThank YOU Dr. Reye, for helping us spread awareness about Reyes Syndrome! YOU,Education and Awareness are our two most vital areas. To promote both education and awareness theNRSF has Public Service Announcements, various websites geared to each awareness need andtranslate-able into 23 languages, an 800 number, and email so information is freely available 24/7.We give out Reyes Syndrome DVD’s; ‘Reyes Syndrome, a Real and Present Danger’ and our MedicalProfessional’s Reyes Syndrome Learning DVD; ‘Reyes Syndrome and its Mimickers’. We have aScientific Advisory Board, all of whom are pioneers and well known doctors in their respective fields ofresearch and medicine.We offer brochures, bookmarks, wallet size ‘ingredients to avoid’ cards, blogs, widgets, blidgets, rssfeeds, websites, Facebook pages, all chock full of education and awareness about Reyes Syndrome andthe Teens and Tweens self-medicating issue.Our print material, and our electronic material, is created in-house. The NRSF works with the FDA, theCDC, NIH, WHO, and many, many other organizations in creating, educating, and spreading ReyesSyndrome information and awareness. The NRSF does not solicit government funding. We rely solely on the generosity of people like you, and corporate sponsorship. We invite you to join us and Champion Children!None goes his way alone:All that we send into the lives of others comes back onto our own.
  8. 8. Why Support Our Mission to Eradicate Reyes Syndrome? Red Willow County Health r the Department: We are a hool fo health department that rk Sc on to New Yo ibutidistributes the Reyes Distr es Deaf: s familisyndrome form to parents nt studeafter the varicella vaccine leis administered to their Midd l ett ve Bart I ha Newton Fall ol: your s Elementary S cho li ed on y School: Di ys re disp la stribution to alwa e to g incoming ki ndergarten web pag ainin cont parents at ucts kindergarten prod for my readiness sc irin ome reening and asp o bec ur parent meet ent s wh Yo ing. stud ver. wi th fe been ill s ge ha ful. Shelby High School:I used we b pa urce reso your website for v ery ! k you instructional purposes today Than and my students found it Center for Employment Training/ useful and interesting, not Brighton Center: Hand-outs to mention shocking!!! during lecture to 50+ Students. l: h Schoo Scottsdale CommunityCarra bec Hig informa tion College: Distribution us ed your II have you.... years . Thank ls to nursing students for 20 dividua ind many in during Reye’s Syndrome still f on abou t ayne, ed educati presentation. : Fort W that ne irin spital Case Reyes and asp Dup ont Ho to ER, bution Distri cs IN, diatri rs, Pe Normandy School Manage District: Distributed Collewith a Presentation to 5,200 ge Pr on ed ep El ucati ementStudents. I am a nursing ng th ary S immun e Hmo chool izati ng Co : Wosupervisor and I would like poten ons a mmuni rking tial nd ca ty onto present to my nurses this chick re of en po kids x out aftereffort to practice safe OTC break a .administration. Healthcare United Independent School Education Re Supply: Dist sources & District: Distribution to All ributed dur Universal or ing Nursing Staff so they can Pediatric F classes and irst Aid disseminate to all campus Weekly indi classes vidual staff and 40,000+ Students.
  9. 9. To know that one life has breathed easier because you livedhere… This is to have succeeded. As the Child Development teacher at the Helen Berube Teen Parent Program in Pittsfield, MA, I am thrilled with the Reyes Syndrome material we just received. Thank you so very much for your prompt response as I want all of our young women to receive this valuable information. A top priority of our program is to provide our young mothers with appropriate information to allow them to become proactive for their children as well as for themselves. Again, please know how grateful we are for your immediate attention. Nancy A Peterson The Helen Berube Teen Parent Program My daughter had Reyes Syndrome when she was 3 years old. She will graduate from nursing school to pursue pediatric nursing. I will spread this information because I know first hand how important it is. Thank you for your continued efforts to educate the masses on this topic. Childrens Resource Network Centers: Thank you so much for assisting us in training care givers and parents about Reye’s. We will continue to inform others through our training classes in hopes that one day all children will have the benefit of early diagnosis leading to positive outcomes.
  10. 10. Accomplishments2010 Accomplishments:• January: The NRSF’s 35 Year Commemorative Book is published and shipped to those who have ordered the book. All comments are favorable.• February: Through the efforts of the NRSF and its Aspirin Committee Chairperson, Marianne Piemonte, Proctor & Gamble pulled the marketing of their InstaCool Product, which appeared to be targeted at teens and young adults. The NRSF designed a NASCAR race car and entered the Toyota "Sponsafy Your Ride" Contest.• March: Food Lion was contacted and the request was made by the NRSF to remove low dose and "childrens" aspirin from the baby aisle of their stores. They agreed, and the NRSF is monitoring the situation.• April: The Spring Newsletter went out. The NRSFs "Sponsafy Your Ride" car came in 76th out of more than 10,000 entries, thanks to more than 1000 members, survivors, families and friends voting for the car.• May: The NRSF holds a Moving Sale fundraiser and raises more than 600.00 the first day. Dr Terry Hurst retires as the director of the Lake Park Annual Bowl-A-Thon after more than 30 years of guidance and support in the longest running fundraiser for the NRSF. A special letter and plaque was given to Dr Hurst and presented to him by Trustee, Marianne Piemonte.• June: The 36th Annual Meeting is held June 5th, 2010 at the Washington House Inn in Cedarburg, Wisconsin. Board of Directors and Trustees are elected for a 2 year term. A mobile website goes online at• July: Pepsi Refresh Everything Grant application submitted to Teach Tweens and Teens the Dangers of Self-Medicating. Registered Created a YouTube Video; Annie Pill for Refresh Everything Pepsi Grant. Opened up the NRSFs new donation / legacy / estate information website. Established a presence on LinkedIn, Facebook and Twitter Social Networking sites. New Heart-Shaped Logo Lapel Pins were donated to the Foundation by the Jeffrey Lasky Foundation and Tim & Cindy Pitterle.• August: Pepsi Refresh Everything Grant Application is approved for September voting. People in cities across the US rally the votes for the NRSFs Pepsi Refresh Everything Grant; To Teach Tweens & Teens the Dangers of Self-Medicating. Registered Kids Can• September: Reyes Syndrome Awareness Month. Voting for Pepsi Refresh Everything Grant; Started in 267 place, ended in 182 place. Filed for Indiana Corporate Registration.• October: Fall Newsletter went out, including 2011 Membership Drive; Be A Member Add A Member Campaign. website developed.• November: Created first Blog at Created first Widget for Google, Yahoo, MSN and other home pages. Created first Blidget for anyone to download and add to their home page. Created Facebook Cause: Teach Tweens & Teens the Dangers of Self-Medicating. New Donation Canisters are available.• December: Re-created our School Download Package to include information about Chicken Pox Parties and updated information about Flu medications and added salicylate ingredient cards, and a trendier look to the entire school package.
  11. 11. On the Inside of the NRSFThe Inner Workings of the National Reye’s Syndrome Foundation, Inc.The NRSF is under the direction of a four member volunteer Board ofDirectors; a President, Vice President, Treasurer, and Secretary.There is a seven member volunteer Trustee Board that includes ourAspirin Chairperson and our Scientific Advisory Board Chairperson.Our volunteer Scientific Advisory Board consists of seven prestigiousmedical doctors and researchers who graciously volunteer their time and expertise.Both our Medical Director and Legal Counsel volunteer their time and expertise as well.Everyone who participates with the NRSF volunteers their time and skills.The Foundation has only one person on payroll, and that is our Administrative Assistant, whose skills inOffice Management, Volunteer Coordinating, Desktop Publishing, Website Design and Management andAccounting actually saves the NRSF thousands of dollars each year.Office space for the NRSF is donated, as are ‘overhead’ expenses like electric and Internet access.97% of all donations to the Foundation are spent on Program Services; Awareness and Education.3% of donations are spent on Supporting Services like Management and General and Fundraisingexpenses. All financial statements and our 990 are available upon request.As you can see, we take our Program Services very seriously. We understand the power in Educationand Awareness. We know we save young lives.We invite you to create a Legacy for yourself, and or, your company.We invite you to get involved with the National Reye’s Syndrome Foundation—a Foundation you cancount on to be responsible for your trust in our mission to eradicate the incidence of Reyes Syndrome.We invite you to touch the lives of children in your community. In the United States, and around theworld.We need you. They need you.We invite you to be a Hero, and Championa Cause that Saves Lives…. Join Us
  12. 12. Your OpportunitiesOur commitment is to eradicate the incidence of Reyes Syndrome.We know that with education and awareness about Reyes Syndrome, we can accomplish our mission. ♦ Your opportunity is to be a Hero, a Champion, for children. ♦ Your opportunity is to be a part of History in eradicating this disease. ♦ Your opportunity is to involve yourself, and or, your company in supporting a program that benefits children in your community, across the United States, and around the world.Where Your Donation is Needed ♦ Every Year we mail out a postcard to 136,000 schools across the US and its Territories.School Nurses are directed to a page on the ReyesSyndrome.Org website where they download apackage of Reyes Syndrome information in both English and Spanish.You might ask why we just don’t use email to remind our School Nurses about downloading this ReyesSyndrome package. What we have discovered is that School Nurses are moved around through districts,or they go to work in hospitals or private practice. Email addresses change every year. Schools close andnew ones appear every year. Email in this instance just does not work.We’ve gotten the cost down to printing a postcard and non-profit postage: $40,000.00 every year.And, this mailing reaches millions of families with Reyes Syndrome information every year. ThisAwareness program is the most powerful tool we have today. ♦ Teaching Tweens and Teens the Dangers of Self-Medicating Self-Teens and Tweens are at serious risk of Reyes Syndrome. They take medication without consultingparents or caregivers, they share medications at school. They do not think to talk to a doctor or otherhealth professional about their symptoms, they self-diagnose and then self-medicate.We know how to reach out to this group. We have a plan we know will work. We can incoporate thisissue with our annual school mailing, and provide information to School Nurses as a download from theReyesSyndrome.Org website.We have to reach out to these youngsters where they spend their time; the Internet. We can develop, in-house, a powerful website that Teens, Tweens, Parents, Nurses and Medical Professionals can use foreducation on this self-medicating issue. We will use YouTube, Facebook and the various other socialnetwork sites to spread our message to teens and tweens.Public Service Announcements would assist in spreading education about this issue quickly.As with any startup venture, capital needs to be raised to jumpstart the much needed educational andawareness programs. Estimated cost of this most important project is $150,000.00 Once in place, allthis project would require is maintanance.
  13. 13. Every $100.00 you donate reaches 1000 children.97% of all donations to the Foundation are spent on Program Services; Awareness andEducation.3% of donations are spent on Supporting Services like Management, and General Fundraising. How many children’s lives would you like to save today? Membership FormI accept your invitation to become a Member of the NRSF!Please enroll me as: Your Comments:Annual Corporate Sponsor $500.00 - Guardian of Children $1000.00 - Protector of Children $2500.00 - Champion of Children $5000.00 - Hero of ChildrenAnnual Private Donor $200.00 - Patron Membership $500.00 - Benefactor Membership ** All donations are tax deductible. $1000.00 - Guardian Membership I will donate materials; please list what $2500.00 - Champion Membership you will donate monthly or yearly:My Company will Participate in MonthlyFundraisers for Children A __ monthly or __ weekly Dress Down day A __monthly or __ weekly Raffle I will place a NRSF Donation Canister at my site. Other:Your NameCompany NameAddressPhoneEmailDesignated Contact PersonPhoneEmail Thank You! & Welcome!
  14. 14. Reach out to me. Teach me. Teach Our Teens and Tweens the Dangers of Self– Medicating. I will listen.Reach out to the children in your Community, across the United States,and around the world… Educate; Save Young Lives! Teach me, because I do not know.
  15. 15. Teach my Mommy Kids and aspirin products don’t mix! Remind us.Grandparents as Caregivers We’ve forgotten. Help me keep my baby safe. Don’tbreastfeed and take aspirin Teach Me products and I will listen.“The great use of life is to spend it for something that will outlast it.”
  16. 16. F ew will have the greatness to bend history itself; but each of us can work to change a small portion of events, and in the total of all those acts will be written the history of this generation. -- Robert F. KennedyWe thank you for taking the time to consider your participation with theNational Reye’s Syndrome Foundation.Should you have further questions, or require additionalinformation, please contact us at:National Reye’s Syndrome Foundation426 N. Lewis StreetPO Box 829Bryan, OH 43506800-233-7393NRSF@ReyesSyndrome.Org