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What really bothers me the most is my paternal grandmother was bedfast with arthritis for the last 25 years of her life – I never saw her walk. at the time she was sick. Dr. Brown was using AP as a successful treatment in the 1940's – when will this treatment ever receive the funding and widespread use we all need?[/color]
Imagine what I was thinking when the Dr told me I had arthritis – I saw my grandmother and one joint flair after another I saw myself spiraling downward into a dark abyss…
That has not happened to me because of AP. If you saw me you would never know I have arthritis. Sometime even I can forget I have it and as you all know – that say a LOT!
Thank God for Dr. Brown and his work – and to the Road Back Foundation for getting the word out and all of the support offered here when we need it most. HOPE is the greatest of all the gifts I personally received from the RBF.
Here's to the volunteers and to the 1000 and growing members. You are the GREATEST!
[user=206]Texas T.[/user] wrote:
Dr. Brown was using AP as a successful treatment in the 1940's – when will this treatment ever receive the funding and widespread use we all need?
You're not alone in the frustration! Trouble is, the studies need funding and few are going to study a cheap drug that won't bring in huge profitable returns. 🙁 There's just too much money to be made on the current rheumatological drugs…so really it's up to parties that are independent of pharmaceutical interests and funding can be hard to come by in those instances.
The Road Back has helped to fund studies in the past like MIRA and the minocycline in scleroderma trials, but the monies from these came from donations. Today, donations to the RBF are in serious decline….we're all just as frustrated as you, wanting many more to have access to AP and to have it mainstreamed with more studies, but the monies just aren't flowing to the degree needed for such projects.
Volunteers are doing what they can, with the limited available resources, to get the word out by doing things like having a display table at the Choctaw Health Fair (high incidence of scleroderma among native americans) a few months back, but even the costs for a booth and printed materials are high….not to mention numerous daily phone calls and free mailings of materials that are sent out to people all the time upon request. And currently a lot of investment is being put into renewing the website's old software, refreshing its look and making it more navigable.
So, really the power is in all our collective hands…and we all happen to be the ones who are the weakest and sickest. It really sucks big time….but in many ways it is a grassroots movement. We are all the movers and the shakers if we all really want it….we're the ones who can make this happen! 😀 And, judging by the ever-increasing numbers registering, word is getting out now pretty fast and testimonies like yours are pretty powerful stuff! As good old Gandhi said, “Be the change you wish to see in the world.” I guess we're “being” that change just by getting well! Can't wait till you're ready to write your full testimonial for the website, Teresa!
Peace, Maz
[user=206]Texas T.[/user] wrote:
I can make a copy and mail it to you the old fashioned way if you'd like? Just send your “snail mail” address via IM and I will send it along to you. That way you will have a copy to present to you MIL's doctor.
Teresa, just a note to let you know that I just received the copy of the Dr O'D letter to your doc. Thank you so much – this is just perfect and will help my MIL so much to make her case to her GP and rheumy in the UK.
Just want you to know how grateful I am that you took the time to snail mail me this info. Very kind of you!!!!!
Peace, Maz
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