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Reye’s Syndrome Information; Caregiver Handout

Reye’s Syndrome doesn’t make news headlines anymore like it use to in the 1970’s and 1980’s.  That doesn’t mean it has gone away, though.  Thousands of children’s lives are spared from Reye’s today due to constant efforts to educate parents and caregivers about the dangers of aspirin-containing products and children.

However, here at the Foundation, the phones still ring, and email comes in, from frantic parents who discover that a grandparent, a babysitter, or other caregiver has given their child aspirin.  Some times, the calls are from young parents who gave their child an aspirin product and then read the label warning them not to.

It’s just a normal progression in life; people forget.  Especially the older we get.  The Reye’s epidemic of the 70’s and 80’s were 30 to 40 years ago.  It’s easy for grandparents to forget those terrifying times.  And, today, with the lowered incidence of Reye’s Syndrome, doctors don’t see cases, and Reye’s has quietly slipped out of mind.  Doctors tell parents some_drugs_are_not_for_childrennot to give a child aspirin, but does not warn about other aspirin-containing medications like Pepto-Bismol, a product containing bismuth-subsalicylate, also known to trigger Reye’s Syndrome in children.

To make it easier on parents, we have created a Reye’s Syndrome caregiver / babysitter handout you can download and give to anyone who is going to be with your child while you are away.

Tuck several copies into your diaper bag, or purse, keep copies in your car, download it to your phone, store it in your email, or in your Cloud Box, anywhere you can access it, print it, or email it to someone who will be providing care for your child.

Tack it to your refrigerator,  on the bathroom mirror, at your baby’s changing station, on the door to your medicine cabinet, next to your emergency numbers, anywhere your caregiver will notice it, and read it.  Before you leave, point it out, and have them read it over so they understand the seriousness of the issue.

Free Handout!

Free Handout!

Not only will you be protecting your own child in doing this, you will educate any child under the age of 19 who may be babysitting for you, that they too, are susceptible to Reye’s and should not be taking these products.

Another by-product of using this for any caregiver, is you alleviate any guilt or hard feelings with family and relatives who may have forgotten about Reye’s and who innocently thought they were doing the child some good by giving him an aspirin.

Guilt is a very difficult, and a huge issue for grandparents to live with – don’t put them through it – just give them a copy of this handout.

Download your copy, and send copies to other parents, or let them know where to get a copy.

 

 

Related Information:

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September is Reye’s Syndrome Awareness Month!

Just in time for school, September of each year is designated as Reye’s Syndrome Awareness Month!

Just in time for Reye’s Syndrome Awareness Month, the National Reye’s Syndrome Foundation is offering some great tee’s in 3 fabulous colors to help spread the word that Kids and Aspirin Products Don’t Mix!

We hope you care enough about eradicating this child-killing disease to support our programs and help us get the word out by purchasing and wearing a “Be Wise About Reye’s” tee-shirt.  RS Awareness Month Tees

Tee’s on sale for $15.00 now include:

Ash  — Light Blue  — Bright Green

Tees can be ordered until August 20, 2013 so they can be shipped to you before September.

This is a crowd sourced awareness campaign and we have to sell at least a total of 10 tees in the color you choose in order to have them printed.  If you order a tee, and we don’t meet the goal of selling 10 tees in that color, you will not be charged and your tee will not be printed.  If you need more information about how this works, email the foundation at: nrsf(at)reyessyndrome(dot)org

We will take credit card orders over the phone also at: 800.233.7393

Join us in eliminating the incidence of this child-killing disease! Order Your Tee Today!!  It’s tax-deductible, too!

Thank You!

National Reye’s Syndrome Foundation
501(c)3 Charity – est. 1974
www.reyessyndrome.org

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Reporting Adverse Medical Effects

Reporting Adverse Reactions To Your Child’s Medications

Most pediatric clinical trials involve a relatively small number of patients, and problems might not be detected until the reporting_saves_lives products are in widespread use. And a drug or device might be studied in one pediatric age group, but prescribed and used in another age group in which it has not been studied, the FDA states.

Consumers can play a critical role in helping the Food and Drug Administration (FDA) assure children’s access to safe medical products.

Reporting to FDA such “adverse events” as unexpected, serious side effects, accidental exposure, and product quality issues can prompt the agency to act—and it can also bring new pediatric safety information to light.

In 2012, FDA received nearly 900,000 adverse event and medication error reports, but only 5 percent were associated with children under 18 years of age. Either parents or caregivers don’t know that they can report adverse effects to the FDA, or they don’t know how.

In 2007, the agency began receiving consumer accounts of serious side effects in children who were accidentally exposed to prescription topical testosterone gel products through contact with the skin of an adult male in their household who was using these products.

This information triggered an FDA investigation that resulted in stronger warning labels to alert the public. FDA also worked with testosterone gel product manufacturers to create potentially safer versions and to identify places on the body where the gel could be applied so that it is less likely to come into contact with children.

These reports from consumers made a big difference. the FDA found it extremely rewarding to work with those families who suspected that something might be going wrong and contacted FDA to investigate the situation. The FDA wants to prevent these harmful situations from happening to others and ensure medical products are safe for everyone to use.

What to Include:

Many adverse event reports do not include relevant information, such as the patient’s age, which can delay the identification of serious problems in children.

“The quality of reports is important,” says OSE director Gerald Dal Pan, M.D., M.H.S. “Document what is happening as much as possible. FDA needs the same kind of information as your health care provider to assess a potential problem with a medication.”

Consumers don’t have to prove that a medication or device caused the problem. “What I have found to be most helpful in reports from consumers is a clear statement about the event, followed by a more detailed description of what happened,” says Wyeth. FDA also recommends including information about:

  • Product name, type, dose, and how it was given (or administered);
  • How long the product was used;
  • Age of the child;
  • Other medications or medical conditions present at the time of event;
  • Outcome (such as what happened to the child if the medical product was stopped); and
  • Contact information for the person submitting the report and for the child’s health care professional.

Consumers often have the most details about what they are experiencing and should contact their health care provider for medical care, and then report the problem to the FDA.

What Happens to the Report

Each report is stored in a database monitored by FDA staff, who evaluate the reports, consult with medical staff and the manufacturer, and determine if more study is needed. There is a wide range of ways for FDA to communicate new safety information to the public, including warnings in the product label, patient monitoring recommendations, dosage adjustments for certain patients, medication guide updates, special programs like registries, and product withdrawal. (Medication guides are paper handouts given with certain medications by the pharmacist.)

FDA’s Pediatric Advisory Committee, a group of outside experts, meets two to three times a year to review adverse events for products recently labeled for use in children. Reviews for 215 products have been presented to the committee through September 2012. OPT maintains a Safety Reporting Page with information on products that the advisory committee has evaluated.

report_adverse_effects_to_fdaHow to Submit a Report:

Consumers should report serious side effects or product quality problems to FDA’s MedWatch: The FDA Safety Information and Adverse Event Reporting program.

There are three routes available to submit voluntary adverse event reports to the FDA:

You can also choose to print the blank form, fill out by hand, and submit

  • Call FDA at 1-800-FDA-1088 to report by telephone

Report Adverse Vaccine Events at: https://vaers.hhs.gov/esub/step1

Related Information for Consumers:

Report suspected unlawful sale of medical products on the Internet at: http://www.accessdata.fda.gov/scripts/email/oc/buyonline/buyonlineform.cfm

If you need information or if you have questions or comments about a medical product, please call the FDA’s toll-free information line, 1-888-INFO-FDA (1-888-463-6332) Press 2, followed by 1 for information, then:
for dietary supplements, select 2
for drug products, select 3
for medical devices, select 4
for biologics, including human cells, tissues, and cellular and tissue-based products, select 6

You will receive an acknowledgement from FDA when your report is received. Reports are reviewed by FDA staff. You will be personally contacted only if we need additional information.

What is a Serious Adverse Event?
An adverse event is any undesirable experience associated with the use of a medical product in a patient. The event is serious and should be reported to FDA when the patient outcome is:

Death
Report if you suspect that the death was an outcome of the adverse event, and include the date if known.

Life-threatening
Report if suspected that the patient was at substantial risk of dying at the time of the adverse event, or use or continued use of the device or other medical product might have resulted in the death of the patient.

Hospitalization (initial or prolonged)
Report if admission to the hospital or prolongation of hospitalization was a result of the adverse event.

Emergency room visits that do not result in admission to the hospital should be evaluated for one of the other serious outcomes (e.g., life-threatening; required intervention to prevent permanent impairment or damage; other serious medically important event).

Disability or Permanent Damage
Report if the adverse event resulted in a substantial disruption of a person’s ability to conduct normal life functions, i.e., the adverse event resulted in a significant, persistent or permanent change, impairment, damage or disruption in the patient’s body function/structure, physical activities and/or quality of life.

Congenital Anomaly/Birth Defect
Report if you suspect that exposure to a medical product prior to conception or during pregnancy may have resulted in an adverse outcome in the child.

Required Intervention to Prevent Permanent Impairment or Damage (Devices)
Report if you believe that medical or surgical intervention was necessary to preclude permanent impairment of a body function, or prevent permanent damage to a body structure, either situation suspected to be due to the use of a medical product.

Other Serious (Important Medical Events)
Report when the event does not fit the other outcomes, but the event may jeopardize the patient and may require medical or surgical intervention (treatment) to prevent one of the other outcomes. Examples include allergic brochospasm (a serious problem with breathing) requiring treatment in an emergency room, serious blood dyscrasias (blood disorders) or seizures/convulsions that do not result in hospitalization. The development of drug dependence or drug abuse would also be examples of important medical events.

Related Information:

What Is Reye’s Syndrome

After Giving a Child Aspirin

Aspirin Containing Products

Other Names for Aspirin

Fraudulent Flu Products

Herbal Remedies

Kids And OTC Medicines

OTC Medicines Kids Should NOT Take

Multiple Combination Meds and Your Child

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Grapefruit, Drug Interactions

Don’t take this with that! Seriesgrapefruit

Grapefruit causes problems when taken with certain medications

Sometimes the juice just isn’t worth the squeeze…especially when combining grapefruit with medicines.

While it can be part of a balanced and nutritious diet, grapefruit can have serious consequences when taken with certain medications. Currently, there are more than fifty prescription and over-the-counter drugs known to the U.S. Food and Drug Administration that can have negative interactions with grapefruit.

As little as one cup of juice or two grapefruit wedges can alter the way your medicines work. When taken with medicine, grapefruit can delay, decrease, or enhance absorption of certain drugs; as a result, the patient does not receive the prescribed dosage of the medication. If the label on your medicine reads “DO NOT TAKE WITH GRAPEFRUIT” or has similar words, heed the warning. It can save you a bushel of problems.

How it does or doesn’t work

pills

Depending on the active ingredient, grapefruit can reduce the effectiveness of a drug or worse, create potentially dangerous drug levels in the body. Grapefruit can interfere with transporters in the intestine that help absorb drugs. When this happens, less of the drug reaches the bloodstream and the patient receives no benefit.

Grapefruit can also interfere with enzymes that break down drugs in your digestive system. This can result in the body absorbing too much of the drug, which can potentially cause serious problems.

Help may be on the way

Scientists are currently working on breeding hybrid grapefruits that will be safe to mix with medications. In the near future you may be able to enjoy these tasty mounds without compromising your safety. But until the new fruit containers start to arrive, follow these tips:

  • Ask your pharmacist or other health care professional if you can have fresh grapefruit or grapefruit juice while using your medication. If you can’t, you may want to ask if you can have other juices with the medicine.
  • Read the Medication Guide or patient information sheet that comes with your prescription medicine to see if it interacts with grapefruit juice. Some information may advise not to take the drug with grapefruit juice. If it’s OK to have grapefruit juice, there will be no mention of it in the guide or information sheet.
  • Read the Drug Facts label on your non-prescription medicine, which will let you know if you can have grapefruit or other fruit juices with it.
  • If you can’t have grapefruit juice with your medicine, check the label of bottles of fruit juice or drinks flavored with fruit juice to make sure they don’t contain grapefruit juice.
  • Seville oranges (often used to make orange marmalade) and tangelos (a cross between tangerines and grapefruit) affect the same enzyme as grapefruit juice, so avoid these fruits as well if your medicine interacts with grapefruit juice.

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NRSF and Dick Van Dyke Go To The SAG Awards!

In 1987, Dick Van Dyke lost his granddaughter, Jessica Van Dyke, to Reye’s Syndrome.  Like so many others, Dick’s dickvandyke1relatives and friends had never heard of Reye’s Syndrome prior to Jessica’s death. When Dick found out about the lack of general knowledge on this childhood killer, he pledged his full support in bringing the awareness of Reye’s Syndrome to the public by volunteering to become the Honorary National Chairman for the National Reye’s Syndrome Foundation.

He donated his time and services to create a series of television and radio commercials for the National Reye’s Syndrome Foundation to raise public awareness about Reye’s Syndrome and the danger aspirin posed to children.  That same year, he became the official spokesperson for the National Reye’s Syndrome Foundation.

 Dick Van Dyke Warns about Reye’s Syndrome

  During that time, he also promoted Reye’s Syndrome awareness by appearing on the Phil Donahue Show and Hour Magazine co-hosted by Gary Collins. Dick participated in the Annual Jaime Beth Slavin Celebrity Golf Tournaments in support of NRSF’s Reye’s Syndrome research.

At the age of 86 he shows no signs of slowing down. This year, the Screen Actors Guild will award Dick its highest honor; The Life Achievement Award.

Screen Actors Guild & American Federation of Television and Radio Artists co-president Ken Howard called Van Dyke “an enormously talented performer whose work has crossed nearly every major category of entertainment.”

The 86-year-old entertainer will receive the honor at the annual Screen Actors Guild Awards ceremony in January. His humanitarian work on behalf of the NRSF will be highlighted in a special segment.

Born December 13, 1925, in West Plains, Missouri, to Loren and Hazel Van Dyke, he grew up in Danville, Illinois. He is the father of Barry Van Dyke, and older brother of actor Jerry Van Dyke, who is best known for his role on the TV series Coach. His grandson, Shane Van Dyke, is also an actor and directed Titanic II. Dick’s career spans six decades.

Dick starred in the films Bye Bye Birdie, Mary Poppins and Chitty Chitty Bang Bang and in the TV series The Dick Van Dyke Show and Diagnosis: Murder. He has a star on the Hollywood Walk of Fame on Hollywood Boulevard, and he has already won a Tony, a Grammy and five Emmy awards.

Dick will be presented the performers union’s most prestigious accolade, given annually to an actor who fosters the “finest ideals of the acting profession,” at the 19th Annual Screen Actors Guild Awards®, which premieres live on TNT and TBS on Sunday, Jan. 27, 2013, at 8 p.m. ET, 7 p.m. CT, 6 p.m. MT and 5 p.m. PT.  The work he has done with the NRSF will also be showcased.

Thanks for all you do, Dick! We’ll be cheering with you!  Chim, Chim, Cherri! 

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2012 Gratitude Report

2012 Gratitude Report

EDUCATION:

school nurseEvery year for the past 38 Years the National Reye’s Syndrome Foundation has provided life-saving Reye’s Syndrome information to the families of students in more than 136,000 schools across the United States and its Territories.

School Nurses and Administrators send a Reye’s Syndrome  packet of information home with each student at the beginning of every school year.  This packet includes Reye’s Syndrome Symptoms literature, bookmarks with NRSF contact information, wallet size ‘ingredients to avoid’ cards for Over-The-Counter children’s medications, a Reye’s Syndrome brochure, and a list of medicines that contain aspirin.

We know that this huge, educational initiative saves the lives of children all across the U.S. and we thank all school administrators and nurses for promoting Reye’s Syndrome Awareness!

VOLUNTEERS:

With the guidance of volunteer leaders from across the United States on our Board,  our RS survivors, and our caring community volunteers, the National Reye’s Syndrome Foundation  has stayed on mission for 38 years, educating and promoting awareness and saving lives.

We truly cherish your investment of time and money, and we count on your trust in our mission to eradicate the incidence of Reye’s Syndrome. The work we do at the NRSF is built on a solid foundation of financial accountability, transparency, and ethics.

And there is one more critically important element to our continued success. You. You are here to show us that there is a community of people who keep the mission of the National Reye’s Syndrome Foundation in their hearts each and every day.

bodNRSF’s All Volunteer Board of Directors

ACCOMPLISHMENTS:

A major milestone was achieved this year when talks between the NRSF, the FDA, and Bayer Consumer Health Care resulted in all aspirin manufacturers removing the words “baby aspirin” from all packaging and marketing.  For 37 years we fought for this life saving agreement and it finally came to fruition.  We know that this change will save many lives and we thank the FDA and the aspirin manufacturers for recognizing and acting upon this most serious issue.

This year, we have developed more technology to support our Awareness efforts; Android Apps, and E-books, promoting Reye’s Syndrome Awareness.  Our new apps; Aspirin Sense and Sensitivity, and A Guide to Chickenpox are both available in the google play store.

Our Reye’s Syndrome website is used by more than 150,000 people across the globe each month.  Visits always increase at the beginning of the school year, and during flu season. We are proud, and pleased to provide this quality information.

With the help of Transfer Me To DVD, located at www.TransferMeToDvd.com, all films and videos spanning our 38 year history have now been transferred to DVD for additional preservation.  We Thank them for donating so much of the work and supplies!

WITH YOUR SUPPORT:babyheart_right

  • 6,500 Emails answered this year.
  • 6,200 Phone Calls answered this year.
  • 136,000 Families Educated this year.
  • 1500 Reye’s Syndrome School Projects this year.

Several Major Dreams Came True this year:

  • Bayer removed all ‘baby’ aspirin packaging
  • NRSF goes to the SAG Awards
  • Millions of Young Lives Saved!

We invite you to join us in our work.  We invite you to donate toward our Awareness and Education programs.  We invite you to join the NRSF as a Member.

Thank You!

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Spring 2012

Spring 2012: Message From The NRSF President

johnAlready, this year is shaping up to be a busy year as we extend our Reye’s Syndrome education and awareness outreach.

This year, we are asking families to come together in support of Reye’s Syndrome awareness.  We are asking the older generations to impart their knowledge to the younger generations, and we invite those younger generations to become active in supporting Reye’s Syndrome education and awareness.  Until we find a cure for Reye’s Syndrome, we must continue putting the message out; Kids and aspirin products don’t mix!  We must hand Reye’s Syndrome awareness down from generation to generation until we find a cure!

The uniqueness of the National Reye’s Syndrome Foundation is that all involved  are family.  My wife, Terri, and I have met most of you, and your families, at annual meetings, at hospital bedsides, at chapter gatherings, and at various fund raising events over the years.  The Foundation itself is one big family, with one single goal in mind; the eradication of a monstrous disease!  We don’t have hundreds of thousands of members, or donors.  We know each of you by name, and the name of your loved one attacked by Reye’s Syndrome.  You are not a stranger, you are family.

In today’s electronic world, it is easier than ever to stay in touch, and it is easier than ever to create support for Reye’s Syndrome education and awareness.

How simple it is to ask your boss if every  Friday, or every third Friday of the month be designated a Reye’s Syndrome Awareness Friday, and perhaps a ‘dress down day’, or potluck can be held with proceeds donated to the NRSF in support of educational programs.  Or maybe one sports game at school each year can be dedicated to Reye’s Syndrome Awareness and ticket proceeds  donated to the NRSF for educational programs.  And, for all those who have ‘friends’ on Facebook and other social media sites, creating a Birthday Wish Cause, or Memorial, with the NRSF as recipient of the gift, is a wonderful and so easy way to support Reye’s Syndrome Awareness.  It also helps the NRSF family grow stronger in outreach programs.

We are in this together, you and I.  We are partners in a common cause.   baby1

We are guardians of children past, present and future, and we shall not let them down.

Join the NRSF family in this most important cause.

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