Mrs Deej wrote on Jul 1st, 2009 at 1:27pm:I just spoke with Royce personally on the phone and gained permission to post his email that was sent out.
I just spoke with Royce personally on the phone and gained permission to post his email that was sent out.
Quote:
As you may have heard through the cluster headache grapevine, I was layed off by Linde Healthcare, and, will not be attending the OUCH meeting in St. Louis.
It is not fully clear yet, how the work I was doing will be picked up and pursued within Linde.
My hope is that Linde will offer me a consulting contract to finish much of what I had started, such as the 4-5 survey based journal articles with Dr. Rozen, the 3 Patent applications on new devices/methods to further enhance oxygen therapy beyond the demand valve based therapy I was working on with Peter and Michael, development of those devices in Linde, and, supporting Dr. Rozen’s clinical study of the oxygen demand valve based DEVO2THERAPY.
However, I wanted to make sure you all knew, that the 2 abstracts on the survey data Dr. Rozen and I previously submitted to the International Headache Congress were accepted as posters. Dr. Rozen will be presenting them. The meeting is this September in Philadelphia. As soon as the abstracts are officially published in August or September, OUCH, CH.com and other websites should be able to post them for everyones education/information.
It has been very rewarding and great fun meeting and working with all of you on various cluster headache related efforts.
Needless to say, I am very disappointed that I did not get to continue and finish my efforts on your behalf. My being layed off when all of the cluster headache projects were at such a major stage of moving forward, was obviously not my decision and I must say came as a shock to me, and, others I have worked closely with in Linde Healthcare.
Hopefully this personal statement will alleviate any questions or rumors.
Steph
Bob, asking what do clusterheads want OUCH to do..that's a good question.
This quote above is from the St. Louis 2009 thread, posted by Stephanie. Look at the bold. The work initiated last year with Royce Fishman was, finally, a start in gaining ground. I'm not here to speak on behalf of anyone FYI, and neither for nor against OUCH. As OUCH members, it makes sense that I would log in to the OUCH website and see what's going on in the member's section. I do think however, that a mass email might have been sent out to alert folks as to the agenda, as has been done in the past. As far as I recall, OUCH has a spokesperson to make announcements, or the mass email is sent out by the webmaster.
I'm sorry too Deej, I just feel this is important for this community. I do realize, however, a handful of people can only do but so much. OUCH hAS grown, in spite of critics, obstacles, illnesses, job loss, family deaths, other crises... you name it. Crossing T's and dotting I's may be looked at as a bureaucratic waste, but when you're really wanting to make a larger impact, it's a necessary evil, in order for it to be taken seriously.
Last year, OUCH took a huge step forward, in my opinion, having obtained the support of Linde company, and informative and heartfelt presentation by both Royce Fishman and his colleagues, as well as world-reknowned Dr. Goadsby at the Convention. Not to mention, development of their masks (Linde), particularly beneficial for clusterheadache sufferers, which many people, members and non-members alike, are now using!
Sufferers and Supporters alike were urged to move, do something- I, and I believe felt the org was on the cusp of a new era. By no means did I think it was the beginning of the end.
Anyone can go ahead and blast me or pick me apart, I just was one of those who worked for the org, and I can tell you it's no picnic trying to get things done in an org when you're on the defensive for one reason or another. Getting kicked in the can afterward hurts like hell, and I know I'm not alone. But I STILL don't think shutting things down is the right thing to do.
I love this community, and OUCH is an extension thereof....I would never have thought everyone would be so near and dear to me.
I don't think I've said anything out of line.. just speaking from the heart, after all, I still do have one.
Pepp