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Kit Tarka Foundation winds down but the awareness work continues

Following the news that our CEO and Founder Sarah is stepping down, we have made the difficult decision to wind down Kit Tarka Foundation. We are, however, delighted to be leaving the neonatal herpes awareness and infection prevention work in the capable hands of larger baby charities.

Over the past few months we have been working with The Lullaby Trust to consider how to save more babies' lives. With the news that we are winding down, they have agreed that our work fits well within their original mission of the 'study and practice of infant health and welfare'. Over the next few months, the advice we have developed around infection prevention and identification will be reviewed by their Scientific Advisory Group with the hope that they can integrate it into the existing advice they provide to families and professionals.

It is estimated that neonatal herpes (the cold sore virus in babies) claims the lives of at least 10 babies a year in the UK, and these are deaths that could be prevented with more education and awareness. The Lullaby Trust has promoted the use of the Baby Check app, which helps to identify if a baby is seriously ill, for many years and the infection identification advice we have been advocating will be a great addition to the advice and support already provided by the Baby Check app. We hope that by working together, these important messages can reach more families and more babies’ lives can be saved.

We are also pleased to announce that we have recently awarded Bliss, the charity for babies born premature or sick, a grant to enable them to publish information about neonatal herpes on their website and share on social media. An HSV infection is especially dangerous for premature babies so we are very pleased to know Bliss will be continuing the vital awareness work.

So although we are sad to come to the end of an era for the charity, we are thrilled that the awareness and education we have worked so hard to establish will continue in such capable hands. We very much look forward to seeing rates of infection plummet and neonatal deaths from HSV being a thing of the past.

Our website will remain up and running until all the information it contains is suitably homed elsewhere and we will continue to send physical resources out until our stocks are depleted.

Before we go, let's take one last look at our achievements. In the last five years, we have:

  • Funded a long overdue nationwide surveillance research study, which was subsequently extended due to Covid and is due to be published imminently.

  • Published our neonatal herpes information page which is a vital source of information for expectant and new parents and gets thousands of visitors each month.

  • Published the Babies at Risk: Neonatal Herpes Awareness report which showed a worrying lack of awareness of neonatal herpes and the importance of good hygiene practice around young babies.

  • Launched the very popular THANKS (Think Hands And No Kisses) campaign. Physical resources are now in over 70 healthcare settings in the UK.

  • Produced and distributed signs of infection wallet cards reminding new parents when to seek medical assistance.

  • Pushed for inclusion of education of HSV in babies in the NICE (National Institute of Clinical Excellence) guidelines and as a result seen it included in the Antenatal Care guideline published last year.

  • Talked to many, many, midwives, nurses, doctors and the general public about Kit and neonatal herpes.

  • Worked with NHS doctors on public awareness and medical professional training films.

  • Worked with our brilliant illustrator Eleanor Beetle to create impactful resources and social media campaigns.

  • Supported bereaved parents when tragically their child has died from an HSV infection.

  • Heard from parents of happy and healthy toddlers who think their children wouldn't have survived without our awareness work.

  • Hosted three sponsored walks, two GoOrange!'s, one KitFest, one 2.6 Challenge and one Leap for Kit!

We couldn't have done all this without your help so we would like to take this final opportunity to thank our supporters, trustees, medical advisors and volunteers for accompanying us on this journey and enabling us to achieve so much in a relatively short amount of time. We will always be grateful for your efforts on our behalf and your kind and consistent support. We have achieved a lasting legacy for Kit and we couldn't have done it without you.


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