Meetings

[ajr]

Are there meetings for everyone to get together as was the case when Dr. Trentham would come to speak in Boston?

[Maz]

Hi ajr,

Unfortunately, no. The RBF physician round tables and conferences have not occurred since the early 2000s. This is due, in part, to lack of volunteers to handle conference organization and sufficient donations to cover costs. As RBF is an online organization, with a smattering of volunteers scattered about the globe, the main priority in the past 5 years has been to finance a new, more efficient, easy to navigate website to keep its online presence alive. The old website coding had become untenable and was too hard for volunteers to update and visitors to navigate. RBF does have high hopes to create a medical advisory board in the future and perhaps, one day, a private AP physician’s-only discussion forum, so in-person physician round tables may no longer be necessary. Of course, nothing is like the ‘old days,’ as many of the older AP docs have retired, or will soon be retiring. If RBF ever gets back to physician-patient conferences, it would certainly take more helping hands with someone who has the time and organizational skills to get the ball rolling, along with sufficient funding. We can hope, eh?

[richie]

I do not recollect Trentham speaking in Boston in the early 2000,s as he had to keep a low profile due to circumstances at Beth Israel Deaconess Hospital where he was under pressure for using the antibiotic protocol –I recall one get together in Boston –Forrest Gregg was the main speaker –Trentham Sinnott and Tyln John were given awards —To the best of my knowledge there was this and one other on Cape Cod –make no mistake Trentham kept a fairly low profile and while he supported RBF –he was very muted for political reasons about this support

[richie]

Come to think of it –the RBF held fund raisers every year for about three years or so –Boston -Cape Cod and Cincinnati —Boston honored Trentham and Sinnott with Forest Gregg as a keynote speaker –Cape Code honored Tylyn –Cincinnati was an auction and dinner —Each event had a wonderful dinner and a long week end –it was a bit costly but very enjoyable –Folks literally came from all over the country –each event had hundreds of people –physician patient conferences were on line –I do not remember any so-called live conferences -Maz mentions the old days —the so-called big three were absolute giants with reputations of getting people better –three different approaches using antibiotics but these doctors got results !!!!!

[richie]

Henry organized everything back then -Trentham didnt come to Boston he lived there !!!!!!!!!!!!!!

[whaleharbor]

So this is me, just speaking as me…even though I’m listed here as a moderator or some such. Here’s my thoughts as just me which may or may not be the opinion of the RBF. I think meetings are a great idea. If you think they are a great idea as well, then please step up and say “I’d come and I’d like to help.” I for one am saying “I’d come and I’d like to help.” So you want this to happen…great…let’s do this…but step up…note below that you’d come and you’d help. I personally don’t care of the in person meeting is between 5 of us having coffee one afternoon a local coffeehouse…or a virtual meeting online where we all chat and get to know one another…or a virtual conference where we all get together and type hello to one another, or a facebook group where we meet at any time online on facebook. Big or small, I’d come and I want to help. How about you? Will you come and help? Just think about what your idea situation for a meeting would be and then let’s all make it happen. WE need one another, you know!

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Cheryl F]

Well this is me, just me, I am also listed as something here, but I have been the President of the Foundation for the better part of a decade. I wish I thought if we planned a gathering that people would come, but I don’t. We can’t get even a very small number of individuals, even people who believe this therapy has been lifesaving, to volunteer for the foundation. Donations have not kept up with the operational costs, even though we are an all volunteer staff and have amazingly talented resources gifted to us. Personally, I think, society has changed, and people expect to have this type of information available instantly, free of charge. I agree, and I will be forever grateful that it was here for me when our family needed it way back in 2006.

Conferences, gatherings, meetings, those types of events take enormous amounts of time. If I may be honest with you all. The Road Back Foundation, Board of Directors is currenting planning to update our strategic plan. Where do we go from here. Due to lack of Directors, volunteers, and donations, all opinions will be considered.

Cheryl

[whaleharbor]

The lack of directors, volunteers and donations may be just due to the fact that people don’t realize that they are needed, people don’t realize that they can serve on the board and people don’t realize how fun it is to volunteer – and that they can do as much as or as little as they want when they want. I, for one, had a lot of fun and found it very rewarding to help with a recent project.

I have lots of fundraising ideas. I have a talents that the RBF can utilize. I am forever grateful to the RBF. I know so many others on here are as well, they just don’t realize that you and the directors need help…and they don’t know how to help.

My personal ideal idea for a strategic plan is “make sure that the world knows that minocycline is a known and viable option for dealing with rheumatic diseases and potentially putting them into remission.” The RBF saved my life plain and simple because the info was out there for me to find. Does minocycline work for everyone? Do antibiotics work for anyone? I don’t know. I doubt it…because not everything works for everybody…but it’s worked for me and so many. I’d personally just like for people to know it’s an option.

You need help, Cheryl, ask…ask…and ask some more. Not everyone comes on here every day …people aren’t ignoring, they just don’t realize. So educate us…tell us what you need and we can all help.

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

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