This past week, an ALPS specialist from the National Institutes of Health (NIH) was out in Missouri speaking at an engagement and our new friends doctor went to see him. During their conversation this doctor brought up my friends daughter and expressed how the goal was for her to go for a study at the NIH.
The ALPS specialist informed him that there is a lack of funding therefore they won't be doing ALPS studies at the NIH, at least for the time being.
This was a sucker punch to my gut when my friend told me this, and I know she felt the same way. With how little is known about ALPS, and how few doctors know about it and how to treat it, the NIH seemed like the holy grail, the only place we could go to get the answers and help we needed. And here this specialist, on the team our families needed to be seen by, was saying how it was no longer an option.