Through hosting the AGSD-UK website, I was gradually amassing a number of glycogen storage disease contacts and I wanted to do something with them, to enable all these people to speak to each other. But what?
For some time the only place where patients could communicate on genetic diseases was an email mailing list called gendisease-j, run by a chap called Wayne Rosenfield. Gendisease-j (now called gaucherdisease) was ostensibly for diseases that have a greater predominance in the Jewish community, which included a number of lysosomal storage diseases. Importantly, this included Gaucher disease, which already had an enzyme replacement therapy. Although I am not Jewish and Pompe wasn't really within gendisease-j's remit, I was welcomed and made to feel right at home in that community. A small but characteristic kindness on Wayne's part. That in turn led to contacts with the Gaucher Society in the UK, which proved important. But I digress.
Having seen at first hand the community that Wayne had created, I thought it would be good to try and create something similar for the glycogen storage diseases. And welcoming as the gendisease-j community were, it's one thing to be a guest and another to invite all your friends and family to stay too. So I asked Wayne how to go about setting up a mailing list and he kindly took the time to put me in contact with someone who could help at St Johns University (which at that time hosted a number of medical lists) and then talked me through the business of setting up and running a mailing list. Wayne has been a source of help and advice over the years since - indeed, I have shamelessly plagiarised many of his ideas. So can I just take this opportunity to say - Wayne, thanks for everything.
I had an accomplice in setting up the new mailing list - John Bird of the AGSD-US. John - inexplicably - didn't think my initial title of Gendisease-gsd was a good one and so a return to the drawing board came up with GSDNet - which was duly launched in June 1996. I thought at the time that it would be great if we could get 50 people to join and hoped that we would have enough to talk to each other about. I needn't have worried. GSDNet quickly grew in size and also, I think, in depth. People from all over the world found that they were no longer isolated but part of a community. A community that has shared successes and supported each other through life's ebbs. It has also provided those affected by GSD with a voice at crucial junctures. I can't better the description from the Australian Pompe Association website:
GSDNet is an Internet Mailing List for patients, their families and friends, and professionals.
It is a mailing list for all Glycogen Storage Diseases, including Pompe’s Disease, and here you will meet a great bunch of people.
You can email with other Pompe’s patients world-wide. And if you feel alone and isolated with this disease, or if you want to talk with someone who will understand just what you are going through, if you want to ask questions or you just want to receive the latest news, then this is the right place for you.
You can receive email for all Glycogen Storage Diseases or you can set your particulars so that you will only receive mail pertaining to Pompe’s Disease.
And the good thing is - It’s Free!!
Along the way, we added Ruth Speary and then Bet Cook as co-owners. Truth be told, it's Bet who does most of the actual work these days. Take a bow, Bet.
Today GSDNet has over 500 members, from all parts of the world and is the leading online resource for glycogen storage diseases. It works so well because it is more than the sum of its parts - and that is down to every one of its members. Well done all.
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