In 1996 a young man from Las Vegas, Nevada named Scott Pallack was diagnosed with non-Hodgkin lymphoma. Scott soon discovered that there was an unmet need for people with this uncommon form of cancer to connect and share their experiences.
By: Greg Dafoe
In 1996 a young man from Las Vegas, Nevada named Scott Pallack was diagnosed with non-Hodgkin lymphoma. Scott soon discovered that there was an unmet need for people with this uncommon form of cancer to connect and share their experiences. Finding a local support group didn’t seem to meet this need so Scott partnered up with a local internet provider and started a mailing list group. He called it the non-Hodgkin’s Cyberfamily. All messages were exchanged via email in the beginning. Membership was small in those early days but soon two members of his group provided their own skills to build a public website to complement the mailing list.
The Non-Hodgkin’s Lymphoma Cyberfamily grew in size and soon caught the attention of ABC who did a brief profile of our group on their Good Morning America show. That video is still available to view the NHL Cyberfamily website. http://www.nhlcyberfamily.org/downloads.htm
I joined the NHL Cyberfamily group in 1998 when I was diagnosed with follicular NHL. It had grown to over 200 members by this time. I was looking for people to talk to and to hear their experiences. The cold hard statistics I was seeing when searching the internet was just too frightening and provoked too much anxiety. Like Scott, I was looking to connect with others who could help guide me through what to expect. The advantage to an email based group is that they are there 24 hours a day and not just for an hour or two at a local support centre once a month. You could “talk” to people any time any day. Whether it was a question about treatments, or just to unburden some fears, the group is always there. It was a great source of comfort to me to have this new Cyberfamily.
I have been a member of the NHL Cyberfamily for 15 years now, and it has grown to over 2,200 members worldwide. Ten years ago I became a moderator of our group and the webmaster of our public website. It has been a very rewarding relationship. All these years I have met many other lymphoma survivors and caregivers. Mostly online but in many cases we have met in person when we held local social gatherings or attended the North American Lymphoma Education forum. Our group has helped guide them through the learning process, and support them at times of great anxiety and worry. Being a member of such a large community of people with lymphoma in common helps people feel less isolated and alone. It also makes it much easier to express their thoughts, and worries without overburdening their friends, family and loved ones.
An online support group like ours is no replacement for the support, love and understanding that people need from their close family and friends. It is a great addition to the strong support system we all need to travel the lymphoma road and overcome the challenges we face. I couldn’t have done it for 15 years without my NHL Cyberfamily.
NHL Cyberfamily moderator and webmaster: http://www.nhlcyberfamily.org
