My Nonprofit Reviews

After years of no diagnosis, misdiagnosis and many failed treatments, I turned to social media for support. Hoping to find just one other family whose child was suffering like ours, I found Ms. Champy and her support group, Cure TBM.

Immediately she connected me with resources and staff at Boston Children's Hospital, the only pediatric center in the United States performing surgical treatment on kids like mine. Within a few months, records were transferred and assessments completed. That same year we traveled to Boston for a dynamic, scary surgery, which turns out to have been completely life changing.

Through it all, Ms. Champy and the Cure TBM supporters were with us. Sending cards, checking in, talking to hospital connections about our son to ensure a great outcome. Now a year post-surgery, he is doing amazing, off all medications, and thriving like his friends. 5th grade is treating him well, as is the basketball team, flag football team, lacrosse team, and baseball team.

Thank you Cure TBM, for giving us education, connections, and mostly hope. You are saving lives with your tireless efforts to cure this rare disease!

PCHA is a one-stop shop for patients with CHD and their families. As a parent of two CHD patients, I am able to access local support from other CHD families, education on the latest advancements in cardiac treatment and research, as well as participate in legislative advocacy. PCHA has given me the resources to best advocate for my children and their care and has connected me to a national network from which to learn from and grow with. My family will grow with PCHA, as my young children age, transition to adolescent and adult CHD providers, and eventually manage their care solo. PCHA supports the CHD patient over their lifetime and that's something none of us can go without. It is my pleasure to volunteer with this organization!