What Leukodystrophy or Rare Disease Resources Are on joejohnson.net?

Updated

joejohnson.net is the personal site of Joe Johnson, an Internet engineer in Worcester, MA, and it exists mainly to point people affected by leukodystrophy toward information. The site itself is small: its leukodystrophy content is concentrated in a "Leukodystrophy Info" section that directs visitors to a separate Adrenoleukodystrophy Resources page rather than hosting a large library on-site. If you are looking for a broad rare-disease database, this is a signpost, not the destination.

What the site actually offers

The homepage is organized around three headings: "About Joe Johnson," "Leukodystrophy Info," and "About 'Call Again Soon'." Only the middle one is a resource pointer.

  • Leukodystrophy Info — states that visitors seeking information about leukodystrophy or rare disease should go to the Adrenoleukodystrophy Resources page.
  • Adrenoleukodystrophy Resources — the linked page is where the actual condition-specific material lives. The homepage does not reproduce it.
  • DHA Information and DHA Links — listed among Joe's favorite links, reflecting the site's origin story (see below).

There is no search function, no forum, and no on-site article archive described. Expect a short set of outbound links and personal context.

Why the site exists

The "About Joe Johnson" section explains the motivation directly. Joe's son, Joey, was affected by leukodystrophy, and Joe credits computers, databases, and early online communities with his son's survival — specifically, finding DHA in time through a worldwide online community. That experience led him back to school for an MSIE and into work as an Internet engineer.

This matters for judging the resource: the site is built from a parent's firsthand information gathering, not from a clinical or institutional program.

Where the information came from

Joe Johnson began collecting NALD (neonatal adrenoleukodystrophy) information in 1990, using online databases and other resources available through CompuServe. His stated goal was finding a community of people dealing with the same condition.

That provenance tells you two things:

  1. The material is rooted in early-1990s online research networks, so some links and references may be dated.
  2. It was assembled by a motivated non-clinician, which is useful for community and practical pointers but not a substitute for medical guidance.

What "Call Again Soon" is

The site replaces the Call Again Soon BBS, a pre-Web bulletin board system run out of Worcester, MA on three phone lines. According to the site, it operated from 1990, supported over 300,000 logins, used TriBBS software, and served as a major hub for the QWK mail network called the World Message Exchange (WME). The BBS was dedicated to Joey and to everyone affected by leukodystrophy.

The current website is the continuation of that same dedication — a modern front end for what was once a dial-up information exchange.

Who this is useful for

If you are… The site is…
A parent or family member newly dealing with leukodystrophy A starting point that leads to an adrenoleukodystrophy resource page and a personal account of finding help online
Looking for a comprehensive rare-disease database Not that — it points elsewhere rather than hosting one
Interested in the history of patient-led online communities Directly relevant: the BBS and WME story is documented on the page
Seeking current clinical or treatment guidance Not a clinical source; treat it as a pointer and verify with a clinician

Practical notes

  • The site is in English and carries a copyright range of 1998–2012, so expect some links to be stale.
  • Joe Johnson uses the nickname joemsie on most social networking sites, which can help you find related material he has posted elsewhere.
  • The page invites suggestions and links, indicating it was maintained as an interactive personal project rather than a static archive.

In short: joejohnson.net is a small, personally maintained gateway to adrenoleukodystrophy and rare-disease information, with its real value in the linked resources and the documented history of the Call Again Soon community.