I am angry with the "non profit" agendas that don't do enough for the suffering of SS.
Jesse, rather than focusing on what other people do wrong, you should focus on what you can do right. Non-profit sarcoma foundations are certainly not answering all patient's needs but they each try to respond to some particular need. You are welcome to start your own foundation to fill the gap. You mentioned the Sarcoma Alliance. When I was diagnosed in 2003, they were very useful to me. They had the best discussion board out there at the time. I learnt a lot from it and I am very grateful to the Sarcoma Alliance for providing it. Unfortunately, later on, they decided to upgrade their discussion board for security reasons and also probably because some users were complaining their e-mail box was getting overwhelmed with messages. It was a bad move. Most followers left the new board to sign up for the ACOR group instead. But the ACOR discussions are not accessible to search engines so it doesn't completely replace the old board :-(
Where I live in South Island, NZ there are about 1.5 million people and I think about 6 new SS cases each year. There are a lot of other good causes for people to support and time and $s are limited. I am just pleased that there actually is a very good specialist sarcoma health team, a cancer society and online support forums like this. Some of the best advise I’ve received is from others with SS and I think it’s pretty cool we’re supporting each other.
At one point I was in a govt funded experimental “wellness program” run by the cancer society and they had all sorts of topics, meditation, food, massage, sexuality, faith etc. and although full of good intentions and capable people it’s wasn’t evident to me that this was going to be a huge success; people are very unique and their needs for support post cancer are very different.
Good point and well taken Gary. I do think however that where I am here on the West coast, it's a totally different situation.
People are available but are not being utilized out of fear of lawsuits.
The Sarcoma Alliance recently took a grant for their "peer mentoring" program. I have yet to help a soul. That was over a year ago when I spoke to the president about helping.
You can call it angry, I call it awareness. Trust me the last thing we need is another non profit...
what a great idea, I was also going to reccomend imerin angels . My daughter joined that group when she moved to chicago upon a recomendation from a friend for her thryroid cancer to help others with that. then she get ss and they have been very supportive for her. they have a fundraiser this weekend in chicago.
Daniel J. Thibault said:
(Dan's wife Katie here...still afraid to log out from Dan's log in b/c he probably doesn't remember his password.)
Check out Imerman Angels. They are a group that pairs up survivors with people fighting Cancer and/or their caregivers/support person. Dan and I both have had mentors and mentored people who have had Synovial Sarcoma. They do some amazing work setting up people who have very similar situations. Sounds like you would be a great support to someone dealing with a new diagnosis.
Keep posting to this group too. It is really encouraging to hear from people who are out there who have been in a similar situation.
Dealing with Dan's mets now has been a huge mental challenge... and I do liken it to PTSD sometimes...especially around the time scans are approaching. The best part is that right now he feels good and is leading his regular life so on our very best days we are able to put his cancer a little further down the line of the list of things we are dealing with in a given day. Never too far out of our mind...but further down the list... We are very thankful.
I agree with you on so many levels. I hope that you are still a member of this site so we can connect.