Challenges of 'Splinter Groups'
"Over the last couple of years it has been confusing, to our Board and community members, as to the objectives of this new competing site since he began taking donations (non-registered charity) and holding contests. A couple of days ago he sent me a very confrontational message about his desire to “divide and conquer”."
Contributions below were gleaned from many community members including Dean Suhr.
Ways to Collaborate
When to Agree to Disagree
- Our solution when working closely together is not possible ... continue to take the high ground in the relationship by keeping things open and friendly, continue to do what you do as best you can, and don't get/put the families, donors and researchers in the middle. If your space is like ours there is more than enough for all of us to do. Do not become consumed by worrying about the other groups and trying to get them to see things your way.
- We have found over the years that it's good to reach out to other groups in your disease space to try to work together. Honey as opposed to vinegar ... collaboration, common ground, etc. But the reality is that other groups exist within all of our disease spaces. They often form (not always splinter) with similar goals but often a personal passion, specific priority, philosophical difference, desire for control (both finances and other aspects), researcher history, access/ability to use technology (your situation perhaps), or for dozens of other reasons.
- If I was Ann Landers or Dear Abby I would ask you to look back at yourself and not assume that your group is "the" one because it's older, has a board, is aligned to xyz, etc. The Internet, open registries, access to research, and many other things make for a changing landscape. If indeed your group is the one to lead the community that will be demonstrated by your work over the long run. We long ago gave up on the word "splinter" ... if that's truly the case the splinter will wither long before the tree does!