On behalf of the entire Board of Directors I’d like to personally welcome you to the NEHI Research Foundation!
My personal journey with NEHI started years ago when my son Mason was diagnosed at 18 months of age. After receiving the news my husband and I immediately scoured the internet to learn as much as we could about this rare disease. It was absolutely devastating to learn that since discovery in 2005 not much progress has been made, in fact there isn’t a lot of information available, period. Determined to do everything we could for our son we joined online support groups, attended conferences and got involved with a non-profit already supporting this disease as well as others lumped under the same umbrella term, Children’s Interstitial Lung Disease (chILD). Our work within the community helped us become better advocates for our son and provided us the opportunity to make many meaningful relationships with other families and professionals. Through the years the constant unknowns for both our son and the many families now holding a place in our heart became more daunting. I knew that the way to provide hope for better tomorrows could only come from conquering all the unknowns through the support of research. With no efficient avenue available to support research, I decided to put my passion into action and start the NEHI Research Foundation.
As the founder and president, I am committed and determined to fund research aimed at improving the diagnostic process, find treatments, and ultimately cure NEHI and all forms of chILD. It is my greatest hope that the foundation will expedite research and bring about true progress to change the future for our children. The foundation will be the voice and advocate for our children who are too young to do so themselves. Lastly, but not least, I want the Foundation to be a place of support, encouragement and assistance to all our families. The NEHI Research Foundation was created for all families and my dedication is not only to my son’s future but to the future of all the families affected.
I am grateful for the efforts and support of the many people who have made the NEHI Research Foundation possible. We look forward to productive partnerships with patients and their families, advocates, healthcare professionals, researchers, and support organizations everywhere. NEHI Research Foundation knows that we can accomplish far more with your support than ever before. The journey to conquer the unknowns starts now!