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What is Joe Johnson?
Joe Johnson is the personal website of Joe Johnson, an Internet engineer in Worcester, Massachusetts, who built and maintains the site as a lasting home for information about leukodystrophy and rare disease. The page is both a personal introduction and an archive: it describes how computers, databases, online communities and the Internet helped his son Joey, and how that experience led him to earn an M.S.I.E. and work as an Internet engineer.
What the site covers
- About Joe Johnson — his background, his work in Internet technology, and his interest in discovering and sharing new tools and ideas.
- Leukodystrophy Info — a pointer to his Adrenoleukodystrophy Resources page for people seeking information about leukodystrophy or rare disease.
- About "Call Again Soon" — the story of the pre-Web bulletin board system (BBS) that preceded this site. Run from Worcester on three phone lines, it supported over 300,000 logins from 1990, used TriBBS software, and served as a hub for the QWK mail network called the World Message Exchange. The website is its successor.
Who it is for
The primary audience is families and individuals affected by leukodystrophy, along with the people who know and love them. A secondary audience is anyone interested in the history of online communities, BBS culture, or early patient-driven information networks.
A practical next step
If you arrived looking for medical or rare-disease information, start with the Adrenoleukodystrophy Resources page rather than the personal sections. If you are researching online community history, the "Call Again Soon" page is the relevant part, since it documents a specific BBS and its role in connecting a worldwide network of affected families.
For broader context on leukodystrophy, the United Leukodystrophy Foundation at United Leukodystrophy Foundation and the National Organization for Rare Disorders at NORD are established starting points.
What is Call Again Soon and how does it help people affected by Leukodystrophy?
Call Again Soon is a personal information hub built by Joe Johnson for people affected by leukodystrophy and for the family members, friends and clinicians who care for them. It began in 1990 as a dial-up bulletin board system (BBS) run out of Worcester, Massachusetts on three phone lines, and the current website is its web successor. The site's stated purpose is to give people facing a rare disease a place to find information and each other.
What the site actually offers
- A leukodystrophy information path. The site points visitors seeking information about leukodystrophy or rare disease to Joe Johnson's Adrenoleukodystrophy Resources page, which he began assembling in 1990 from online databases and other sources available through CompuServe.
- A first-person account of why this matters. Joe Johnson writes that computers, databases and online communities contributed to his son Joey's survival: through a worldwide online community, the family found DHA in time to save Joey's life. That story is the site's organizing purpose rather than a side note.
- A record of a pre-web community. The original BBS supported over 300,000 logins from its 1990 inception, used TriBBS software, and served as a major hub for the QWK mail network called the World Message Exchange. The site preserves that history and the dedication behind it.
- A place to contribute. Johnson explicitly invites suggestions and links from visitors, which is how a small rare-disease resource stays current.
Who it suits
The most likely reader is a parent or relative who has just received a leukodystrophy diagnosis, particularly adrenoleukodystrophy, and is searching for anyone who has been through it. A second audience is someone researching how patient-led networks formed before the web. A third is anyone who wants to reach Joe Johnson directly; he lists Worcester, MA as his location and uses the nickname joemsie on most social networking sites.
The trade-off is scope. This is one person's long-running project, not a clinic or a curated medical database, so it is best treated as a starting point and a human contact rather than a source of current treatment guidance. For broader context, pair it with a large research charity such as NORD or a disease-specific organization, and confirm anything clinical with your own care team.
A practical next step
If you are new to leukodystrophy, start with the Adrenoleukodystrophy Resources page linked from the site, then send Joe Johnson a note with your specific question and any links you have found useful. If you are further along, offer a resource back: the site's value has always come from people sharing what they discovered.
How did DHA and online communities help save Joey Johnson's life?
Joe Johnson's own account credits two things working together: online communities that connected his family to the right people, and DHA, which he describes as arriving "in time to save Joey's life." The chain of events he describes runs through computers and databases first, then people.
The role of online communities
- Joe began collecting NALD (neonatal adrenoleukodystrophy) information in 1990 using online databases and resources available through CompuServe.
- His search for a community led him to start the CALL AGAIN SOON BBS, a pre-Web, multi-phone-line system run out of Worcester, Massachusetts, dedicated to Joey and to others affected by Leukodystrophy.
- That BBS became a hub for the QWK mail network called the World Message Exchange, which he describes as a worldwide community.
- Through that community, the family connected with "the handful of people worldwide that could help."
Why the combination mattered
The practical value was reach. A rare disease leaves a family with few local experts and few other families facing the same diagnosis. A bulletin board system and its mail network let a parent in Massachusetts exchange information with strangers across the world who had already been down the same road — the kind of knowledge that does not sit in a textbook or a local clinic. DHA was the specific treatment lead that surfaced through those contacts, and Joe's framing is that without the technology and the people running it, the connection would not have happened.
For anyone in a similar situation today, the transferable lesson is to treat online rare-disease communities as a research channel, not just emotional support: ask what has been tried, who the recognized specialists are, and which published work or trial a suggested treatment rests on, then bring that to your own clinicians. The tools have changed since 1990 — forums, mailing lists and patient registries have replaced phone-line BBSes — but the mechanism is the same.
Joe's broader site, Joe Johnson, carries the Leukodystrophy and DHA resource pages he still points readers to.
What information does the Adrenoleukodystrophy Resources page provide for families dealing with rare disease?
The Adrenoleukodystrophy Resources page is Joe Johnson's personal collection of information for families affected by Leukodystrophy and rare disease, started in 1990 and maintained from his own experience as a parent. According to the site, it covers NALD (neonatal adrenoleukodystrophy) information he began gathering through online databases and CompuServe, plus DHA information and DHA links — the material he credits with helping him find DHA in time to save his son Joey's life. The site also points to a Leukodystrophy Info section for general rare-disease questions.
What a family can realistically expect
- Disease background and terminology: NALD and leukodystrophy material gathered over years rather than a single clinic handout.
- Treatment-adjacent leads: DHA information and DHA links, presented as resources to read and discuss rather than as medical advice.
- A lived-experience perspective: the site's framing is that of a parent who used early online communities to find the few people worldwide who could help.
- A starting point, not a clinic: it is a link hub and archive; diagnosis, dosing and eligibility questions belong with a neurologist or metabolic specialist.
How to use it
Treat the DHA links as a reading list to bring to your child's specialist, and note publication dates where available, since some material dates back decades. For broader, currently maintained rare-disease navigation, pair it with NORD and NCATS; for leukodystrophy-specific family support, see United Leukodystrophy Foundation.
What is the history of the Call Again Soon BBS and the World Message Exchange?
The Call Again Soon BBS was a pre-web, multi-line bulletin board system run out of Worcester, Massachusetts, and dedicated to Joe Johnson's son Joey and to everyone affected by leukodystrophy. It began in 1990, ran on three phone lines, and used TriBBS software. According to Joe Johnson's own account, it supported over 300,000 logins and became a major hub for a QWK mail network called the World Message Exchange (WME). The current joejohnson.net site is presented as the successor to that BBS.
The WME was a store-and-forward messaging network built around QWK packets: users on participating boards could exchange messages across systems, effectively giving small local BBSs a national or international reach. For families dealing with a rare disease, that mattered. Joe Johnson describes using CompuServe databases and online communities to gather NALD (adrenoleukodystrophy) information from 1990 onward, and credits the worldwide community he reached through these systems with finding DHA in time to save Joey's life.
What the history illustrates
- Pre-web infrastructure still worked. Long before social media, dial-up BBSs and QWK networks linked people across phone lines and time zones.
- Niche communities formed early. A board with a personal dedication could become a hub for a rare-disease network that no mainstream service was serving.
- The path led to the web. Joe Johnson went back to school, earned an MSIE, and now works as an Internet Engineer, with the website replacing the BBS.
For a practical next step, if you are researching early online communities or rare-disease support networks, treat joejohnson.net as a first-person primary account of the BBS era, then compare it with institutional histories of bulletin board systems and disease advocacy organizations. For leukodystrophy information specifically, the site points to its Adrenoleukodystrophy Resources page rather than presenting medical guidance directly. Related sites such as University of Canberra are unrelated to this history despite appearing in the page's link list.
How can I contact Joe Johnson or find him on social media?
Joe Johnson's site points to a single public handle rather than a contact form: he writes that he goes by the nickname joemsie on most social networking sites. That is the most reliable starting point for finding him on social platforms.
What the site itself offers
The page is personal rather than commercial, so it does not publish a phone number or a general contact email. Its own navigation includes a Joe Johnson Resume link and links to his Leukodystrophy and DHA resource pages, which are the areas he actively maintains. If you want to reach him about those subjects, approaching him through the community he built for them is more in keeping with the site's purpose than a cold message.
Practical ways to make contact
- Search the handle joemsie on the social networks you use; he says he uses it on most of them.
- If you are writing about leukodystrophy or rare disease, read his Adrenoleukodystrophy Resources page first so your message is specific.
- For professional or Internet-engineering enquiries, look at the resume page linked from the site to understand his background before making a work-related approach.
- The site invites suggestions and links, so a short message with a concrete resource is likely to be welcome.
A note on expectations
This is a long-running personal site, last marked as updated in 2012, so some links or profiles may be stale. Treat the handle as a lead to verify rather than a guaranteed current address, and check that any profile you find matches the Worcester, Massachusetts background described on the page before assuming it is him.
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