medical advocacy initiative

we're building a network that cares!

Finding Medical Providers who genuinely respect and uphold the dignity and value of children with Down syndrome can be a challenge. We are working on a state-by-state Directory to serve as a trusted resource listing Providers who not only offer excellent care, but also champion the dignity, worth, and purpose of every person they serve. If you are a Medical Provider or you would like to recommend someone for inclusion in the Directory,  please see the links at the bottom of this page!

Why is this needed?

Patients with Down syndrome make up a small percentage of US patients. The CDC reports that in 2008 there were approximately 250,000 children, teens, and adults in the United States with DS. Because of selective abortion, many physicians can go their entire careers without treating someone with DS. 

Along with a general lack of experience with DS, there also appears to be an increased animosity in our society in general, and the medical community in particular, toward the concepts of personhood, patient autonomy, and parental rights. This has led to widespread distrust of the medical community, especially by families caring for children with special needs. The physicians most likely to treat patients with DS are those who specialize in conditions more common in people with DS (i.e., strabismus, hearing loss, infant leukemia); however, these patients are still a minority of a physician’s patient base. 

There is a common saying in medicine among pediatricians that “kids are not just small adults,” because the anatomy and physiology of a child is different than that of an adult. The same is true for a person with DS. For instance, Fockens, et al., reported in 2021 that “in children with DS, tracheal anomalies occur more frequently . . . than in non-DS children.” 

It is critical that physicians understand those differences in treating those patients. Given the above landscape, we and many of our Team Iron Will families have a difficult time finding medical professionals who truly understand DS and treat our children with the same dignity and respect they give to neurotypical patients. 

We learned the best way to find good care for our children is to ask other families for recommendations. That's where you come in! With your help we can make the process easier by creating a directory containing family-approved doctors, dentists, therapists, and more. We already have a handful of medical professionals on board and will be sharing them soon. Please consider helping or joining us!