AN Introduction

Introduction Registered charity since January 2010. Set up for ALL affected by childhood Interstitial Lung Disease (chILD): Provides emotional and practical support Financial assistance for practical items of care Holiday portable oxygen hire Close links with other International chILD organisations Contributed to medical research Working with clinicians and researchers, moving the field of chILD forward Formed in 2009 by my husband and I when our son was diagnosed with a genetic form of chILD. Over our time we have had to educate ourselves with a lot of the medical termininlogy and found that chILD is very rare and complex. Over our time we have had contact from approx. 90 families – which highlghts how rare it is. And as a charity we consult with families on a regular basis and we have grown out of ’their’ needs rather than what we ‘think’ they need. So as hsown here, this here is what we perform to help support families and other organisations and individuals to help move the field of chILD frward.

Small Grants Our small grant award of up to £250 is designed to help children and their families affected by chILD in a practical way. Example of grant funding can be towards: portable oxygen saturation monitor holiday oxygen a specialist pram or pushchair   If you are interested in applying, please check out our website.

Support & Education EMOTIONAL & PRACTICAL ChILD Community - Facebook Closed Group One to one email or telephone advice EDUCATIONAL ‘Get up and Go with chILD’ and chILD EU educational booklet Offers access to search literature Biennial conferences Formed in 2009 by my husband and I when our son was diagnosed with a genetic form of chILD. Over our time we have had to educate ourselves with a lot of the medical termininlogy and found that chILD is very rare and complex. Over our time we have had contact from approx. 90 families – which highlghts how rare it is. And as a charity we consult with families on a regular basis and we have grown out of ’their’ needs rather than what we ‘think’ they need. So as hsown here, this here is what we perform to help support families and other organisations and individuals to help move the field of chILD frward.

Medical Research ChILD UK has contributed to the following medical research: Penn University $100,000 Bike a Million for chILD (Bronchiolitis Obliterans) UK Family Psychosocial Survey American Thoracic Society, chILD Foundation US and ChILD Lung Foundation joint research award in NEHI

Holiday Oxygen Hire of airline approved portable oxygen concentrator. Offers up to 4 batteries (times and rates vary) Annual servicing Free of charge This service has literally opened up the world to chILD families!* *Certain terms and conditions do apply

Childhood ILD Patient Organisations ChILD Lung Foundation – UK Starke Lunge – Germany Working together to support research and improve the lives of families affected by chILD Pequenos Pulmones - Spain ChILD Foundation - USA AFPIE – France ChILD Foundation - Australia

ChILD Research and Respiratory Societies European Respiratory Society European Lung Foundation British Thoracic Society ChILD-EU British Paediatric Orphan Lung Disease British Paediatric Respiratory Society

How YOU can help There are many ways you can help chILD UK and what has accomplished so far could not have been without your help. ChILD is rare so there are little funds available to research and support. Please help us how best you can. Here are some ideas on how you can help ChILD: Fundraise and/or awareness raising events EasyFundraising – shopping online and giving to chILD Share your Story Volunteering Make a donation or sign up to Regular Giving

In Summary ChILD Lung Foundation is a registered charity that offers different sources of support. These include emotional, practical, financial and educational initiatives. ChILD is working with a wide range of organisations to help move the field of chILD forward YOUR help is needed too! Without YOU there is no chILD UK. THANK YOU!! Working to improve the lives of families affected by childhood Interstitial Lung Disease (chILD)