Heather Thompson, Vice Chair
Heather Thompson, a resident of Connecticut, is the mother of Hannah, a 19 year-old with ABCA3. She has been a tireless advocate for her child – beginning when she was born when Hannah was misdiagnosed with pneumonia three times before her first birthday. Ms. Thompson’s tenacious spirit and love for her child lead to Hannah receiving the correct diagnosis when she was nine years-old.
Ms. Thompson acknowledges that the journey of a parent with a chronically ill child can be a very lonely one. Through her work at a summer camp where she is employed part-time, she has arranged for a weekend once a year to bring families together, with the support of Boston Children’s Hospital. The first Lung Family Reunion was held Labor Day weekend 2016.
Ms. Thompson works with families, pulmonologists, researchers and other medical professionals, and over the past four years have successfully worked to bring them together to, provide education and awareness to the chILD community. She was instrumental in forming the BCH chILD Parent Advisory Committee, hosted three conferences, and developed surveys which lead to the publication of the “Living with Children’s Interstitial Lung Disease – A guide for families” brochure. Ms. Thompson also helps raise awareness through social media by sharing children’s stories (generally during Feb for chILD Awareness month) as well as sharing fundraising initiatives.
Ms. Thompson and Hannah enjoy spending their time together with friends, family, and especially Hannah’s little brother Ty. She is a graduate of Bay Path College in Longmeadow, MA, and a member of the National Honor Society. Ms. Thompson is a New Business Technical Consultant at MassMutual in Enfield, CT. Hannah is a full time college student, she also recently started a part-time job, and her mother encourages her to be as independent as possible.