12/23/2013
As 2013 draws to a close, we wanted to thank you for your support of the Children’s Interstitial and Diffuse Lung Disease (chILD) Foundation. We will be celebrating our ten year anniversary as an organization in 2014 and we are extremely proud of our many accomplishments since 2004 including:
- We have raised over a half million dollars of funding for chILD to further our mission.
- We have partnered to offer over $300,000 in research and patient registry grants and we have invested nearly $200,000 in family/patient support and advocacy programs.
- We established a Children’s Research Network (chILDRN) and a Medical Advisory Board that includes some of the most respected pediatric pulmonologists and scientists in the world.
- Along with the chILDRN, we launched a state-of-the-art patient registry that will be used by physicians and researchers to collect patient information to explore better ways to diagnose our patients, effectively manage all forms of chILD, and perform clinical trials to find effective treatments and eventual cures for all forms of chILD.
- Each year, we have hosted an annual family and physician conference allowing families and children living with chILD incredible access to leading pediatric pulmonologists, researchers, and other families living with chILD. Our next conference is in Denver, CO in the summer of 2014. Information will be posted on our website soon.
- This year, our chILDRN published "An Official American Thoracic Society Clinical Practice Guideline: Classification, Evaluation, and Management of Childhood Interstitial Lung Disease in Infancy". This will serve as the major reference for the evaluation and care for children with chILD in North America and around the world and will have a huge impact for our families!
- We recently launched a new website. Please visit us at www.child-foundation.com to see our new look!
While we have come a long way since inception, there is so much more that we need to accomplish. In 2013, our Board of Directors met to define the key strategic platforms that we will need to focus on to achieve future success. These include:
- Continue to raise funds and invest in research that will lead to cures and/or enhanced treatment of all forms of chILD.
- Continue to build and develop partnerships to enhance our research opportunities, obtain new sources of funding, and develop a comprehensive network of care and research facilities.
- Continue to support the patient registry and build the infrastructure to capture patient information worldwide.
- Increase and diversify our resources so we can transition from a 100% volunteer organization to a fully-staffed organization capable of capitalizing on all opportunities for growth.
- Continue to support families through our annual conference and enhanced communication tools.
To accomplish our mission and improve the lives of the children and families living with chILD, we need your continued support as we look to continue to grow as organization and expand our programs in the coming years.
Seasons Greetings to all and wishing everyone all the best in 2014!
We are a 501(c)3 tax exempt organization that provides support, education, and hope for a cure to all families with children battling these life threatening diseases.
