Lets nominate Road Back as the best blog!

[niteowl]

After seeing this request on RAWarrior’s blog to be nominated for best blog, let’s nominate the Road Back Blog to raise awareness on AP instead! Here’s the link: http://www.healthline.com/health/best-health-blogs-contest

It doesn’t require you to submit your email or any other personal info. which is nice. Supposedly there is a $1000 cash prize that I would prefer went to a really useful blog like this one.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Suzanne]

I would love to nominate this board for an award, but I’m thinking it doesn’t qualify as a “blog”.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[niteowl]

Hhmm- Just trying to think of a way to inform the masses. I keep thinking of Sir Paul McCartney who said that if you repeat a melody enough it becomes a hit. There’s got to be some way to get people thinking…Facebook page?

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Suzanne]

I think a Facebook page is a great idea! I know you can have ‘groups’ and ‘communities’, too, but those would take some moderation. A page with links to this site and other info would be something that RBers on Facebook could ‘like’ and have on their own pages.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Jan Lucinda1]

I wrote to my university Alumni Magazine that I was a participant in the Roadback Foundation bulletin board and that RB seeks to inform the public about the benefits of antibiotic protocol for rheumatic diseases. Others could do that.

[niteowl]

Suzanne – Maybe One of the Moderators here might consider fb as a option to spreading the word?
Jan- That is a good idea, too. I also wonder if letters to the local newspapers would help. I may try both.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Maz]

@niteowl wrote:

Suzanne – Maybe One of the Moderators here might consider fb as a option to spreading the word?
Jan- That is a good idea, too. I also wonder if letters to the local newspapers would help. I may try both.

Hi Niteowl,

Thanks so much for kindly thinking of ways to get the word out about the foundation. Facebook may be a future option, but currently we just don’t have the volunteer manpower to deal with the thousands who approach the foundation at the moment. RBF needs volunteers who are willing to help man things here before we can extend RBF’s reach further outwards. That said, it’s not out of the question that at some stage the board of directors may consider setting up an official RBF Facebook page where research and info can be loaded for informational purposes, but without the posting capability of such an external medium, because an interactive FB page would require close moderation similar to this forum. The foundation actually prefers that those interested in the therapy to visit the main website in order to get fully informed and educated about the treatment before diving in, because it’s not always a straight line to remission and seeking an experienced physician to help with the journey can, in many instances, be a critical element for success to be achieved.

Road Back is in the early stages of discussing how best to revamp the main site and, once the strategic planning and finances are in place to move ahead, having options on the main page to Twitter and “Like” on Facebook may also be options.

Letters to local papers are a great way to spread the word about the treatment, hopefully when a person has reached remission and can tell a credible story of success. Cheryl Ferguson’s daughter did this with her local paper a couple years ago:

http://www.theloomisnews.com/article/jessica-ferguson-laps-lifes-challenges

A wonderful way to pay-it-forward and to spread the word is for someone who has recovered from their rheumatic disease to write a testimonial for the main site, but also to contact their local media, just like Jessica Ferguson has done.

Another great thing some have done is to do fundraisers, such as the NYC Marathon Fundraiser that Judith set up a couple months ago. People have got T-shirts made for these events and there is a brochure that can be printed from the main site to hand out. Some people will keep these in their pocketbook to hand out in their rheumy’s waiting room or to leave on coffee tables.

https://www.roadback.org/index.cfm/fuseaction/aboutRBF.sub/subgroup_id/31.html

In a nutshell, volunteers are spread so thin just keeping up with daily physician requests and posts on the forum from newcomers. If anyone is out there who has some free time and is interested in lending a hand, let us know, because there may be skills or knowledge that could fit right in with what the foundation needs for moving ahead. When I began volunteering, my biggest fear was that I wouldn’t have enough knowledge to share with others, but this isn’t all that is needed. Just folks who are willing to welcome newcomers to the forum and to become familiar with the rationale for the therapy (Henry Scammell book and the main site) in order to answer questions or, initially, just from personal experience. Volunteers don’t need to have any special medical background or experience, just a will to extend a friendly voice to a fellow-sufferer, because lots of experience is gained on-the-job, so to speak.

I hope this helps to explain a bit, Niteowl? Thanks again! 🙂

[niteowl]

Thanks Maz,
That is a great idea to print out brochures to leave out. My biggest fear would be that I don’t have much experience with the other areas of Rheumatoid Disease besides RA and Sjogren’s – and even then I only know what I know from my perspective! But if I can help in welcomming or something similar, let me know.
When I have completely finished this Road Back successfully, you can bet I’ll be writing to my local newspapers! This week I’m able to hold my paint brushes pretty well, so that alone is a big advancement. Now to find a comfortable seat!

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Author]

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