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PKIDs Parents of Kids with Infectious Diseases

PKIDs is a national nonprofit organization based in the United States that serves families of children living with chronic, viral infectious diseases and educates the public on various methods of disease prevention. Founded in 1996 by a handful of parents, the group became a 501 (c) (3) nonprofit in 1997. Since then, thousands of families have been helped and millions of individuals around the country have received PKIDs’ health messages.

History

PKIDs started in 1996, when parents adopting internationally were bringing home babies and children with unexpected infections. Parents, wondering what their families were facing, searched for information on the Internet and, while doing so, found each other. In 1997, the nonprofit was officially formed and incorporated in the state of Washington. In that same year, the families served grew to include all sorts of families – adoptive, biological, foster and so on.

Mission

PKIDs’ mission is to educate the public about infectious diseases, the methods of prevention and transmission, and the latest advances in medicine; to eliminate the social stigma borne by the infected; and to assist the families of children living with HIV/AIDS, hepatitis, or other chronic, viral infectious diseases with emotional, financial, and informational support.

Services

Family Support

PKIDs’ staff provides one-on-one assistance to each family and for every situation so that moms and dads can spend their time with their affected children rather than searching multiple places for help.

Disease Prevention Education

PKIDs works on a local, regional, national and, sometimes, international scale to educate the public on the various methods of disease prevention. It is much easier to prevent infection than it is to live with the consequences, as PKIDs’ families know. Disease prevention has been and will remain an important component of PKIDs’ work.

Resources

Websites, Blogs, Podcasts, Newsfeeds

PKIDs uses multiple formats for disseminating information regarding disease prevention and support, including its Website, Blogs, Podcasts and Newsfeeds.

Infectious Disease Workshop

PKIDs’ Infectious Disease Workshop was created for use in schools and elsewhere. The workshop is full of materials for the trainer and activities for various age groups, including adults. Each year, items are updated as needed and materials reviewed for relevancy.

Janis Morrow Scholarship Fund

For those young people bound for college or trade school, the Janis Morrow Scholarship Fund has been set up and application instructions may be found on the website.

Civil Rights

Federal and state laws protect the privacy and integrity of people with disabilities to integrate them fully into their communities. Chapter 11 of the Pediatric Hepatitis Report describes the possible legal protections offered to children with viral hepatitis.

Pediatric Hepatitis Report

PKIDs received a three-year grant from the Centers for Disease Control and Prevention to research, write and publish a Pediatric Hepatitis Report. It is updated as necessary and is considered the go-to resource for families seeking information on various forms of hepatitis in children. Many physicians also use the report as a reference.

Handwashing

One of the simplest, cheapest, safest and most effective means of preventing infection.^[1]^[2] PKIDs produced a handwashing video with accompanying guidelines and activities and sent it to all the school nurses in the country. It’s also available as a free download from the PKIDs website. A flash cartoon about handwashing was made for PKIDs by the Art Institute of Portland and is also available from the website.

Families Connect

PKIDs offers family members of all ages and infection status the opportunity to talk with and learn from one another through its Listserv, Chatrooms and Forums.

Find-a-Doc

Parents whose children are recently diagnosed find themselves wondering how to identify specialists for their children. Through the Find-a-Doc service, parents contact PKIDs and a list of specialists in their area is sent to them, along with tips on finding just the right person to work with one’s family.

Ask the Experts

There are several experts who donate their time to PKIDs. One of the ways they help is to answer questions from the public, and they do this every day with no compensation. Parents from around the world have emailed the experts for advice and always receive an answer.

Tools for Other Organizations

PKIDs provides health message resources for other organizations to use or adapt to their needs. PKIDs offers Public Service Announcements (PSAs) covering a variety of subjects. "Someone You Know Has HBV/HCV" consists of pamphlets for families to give to others to help them understand what it means to know someone with chronic viral hepatitis. "Standard Precautions" is a 2-page handout describing the why and how of disease prevention techniques for daily living. PKIDs also offers summaries of articles discussing best practices for working with adolescents.

Programs & Projects

GetVaxed

For years, most vaccines were made for children and babies; teens and young adults were not offered much in the way of protection by vaccination. In the last few years, however, more vaccines have been made for this age group.^[3] GetVaxed.org is a website geared toward teens and young adults and educates them about what’s available.

Pirls

Tweener and teen girls have lots of questions about health. PKIDs developed the Pirls site as a fun place to hang out, share gossip, play games and get answers.

M.O.V.E.

Make On-Time Vaccination Easy (MOVE) is a program encouraging parents to start their baby’s immunizations on time and to stay on schedule. Keeping up-to-date on immunizations prevents unnecessary infections that can harm an infant.^[4]^[5]

Silence the Sounds of Pertussis

Pertussis is the only vaccine preventable disease whose incidence rate continues to rise rather than fall. ^[6] Silence the Sound of Pertussis, and its sister Hispanic program, Acalla los Sonidos de la Tos Ferina, encourages parents and other adults and adolescents around babies to get vaccinated in order to protect the babies in their lives.

Flu’s Gonna Lose

PKIDs’ Flu’s Gonna Lose campaign urges family and community members to spread the health by refusing the opportunity to experience the vagaries of influenza and, instead, offer up an arm to immunization, wash our hands, cover our coughs and sneezes, and stay home to stop the spread of disease.

HPV—Not Me!

Human papillomavirus is very prevalent in the United States.^[7]The good news is that infections can be slowed and perhaps stopped so that no more women die of cervical cancer.^[8] HPV―Not Me! encourages girls and young women to speak with their healthcare providers to determine how best to protect themselves against HPV.

PKIDs China

PKIDs China, cofunded by the Children's Vaccine Program at Program for Appropriate Technology in Health, was launched in 2002 and finished its first year in mid-2003. Two disease prevention workshops were designed and distributed; one for laypersons and one for those with medical training. Parents for Prevention

Parents for Prevention

Parents for Prevention is a network of parents and family members of children affected by vaccine-preventable diseases, as well as adults who themselves have been impacted by infectious diseases. These advocates speak with local and national decision-makers, media and others about the need for high levels of community immunity and they utilize PKIDs’ resources and materials to educate the public about effective disease prevention strategies, including standard precautions and handwashing.

References

^ NIH on Handwashing
^ Mayo Clinic on Handwashing
^ Vaccines for teens and young adults
^ Recommendations of the Advisory Committee on Immunization Practices (ACIP)
^ UNICEF data on timely immunizations
^ Gregory DS (2006). "Pertussis: a disease affecting all ages". Am Fam Physician. 74 (3): 420–6. PMID 16913160.
^ How common are HPV and related diseases? from cdc.gov
^ How can people prevent HPV-related diseases? from cdc.gov

External Links

[1] NIH on Handwashing

[2] Mayo Clinic on Handwashing

[3] Vaccines for teens and young adults

[4] Recommendations of the Advisory Committee on Immunization Practices (ACIP)

[5] UNICEF data on timely immunizations

[6] Gregory DS (2006). "Pertussis: a disease affecting all ages". Am Fam Physician. 74 (3): 420–6. PMID 16913160.

[7] How common are HPV and related diseases? from cdc.gov

[8] How can people prevent HPV-related diseases? from cdc.gov

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