Diane Aronson

Health history

Rheumatoid arthritis (RA) treatments

Discovered the book The Road Back and learned about a different treatment using antibiotics.

Researched and found patients who had used the treatment and done well.

Had joined Arthritis Support Group and met many very ill patients on traditional treatments.

Investigated tetracycline antibiotics and learned class of drugs used long-term for acne and patients with chronic bronchitis.

Had growing concern about potentially toxic drugs used for RA treatment given past health and future, thus highly motivated to try option.

Growing body of scientific evidence.

Proven safe and effective.

Enhances quality of life.

Improves disease markers.

Low incidence of side effects

Cost-effect.

Background in education and advocacy

Years of work with nonprofits

Association with health-related nonprofits

Personal history of rheumatoid arthritis

Was on Board of Directors and Past President

Began in 1993 and grew as an international Foundation with Chapters in the US, Canada, Australia, the United Kingdom and Japan.

Board of Directors, one paid Director with consultants for book keeping, etc.

Charged for all literature and newsletters.

High costs for printing and mailings.

The Road Back Foundation provides information about and advocates for antibiotic treatment for rheumatic diseases.

Although the antibiotic treatment for RA had a peer review, journal-reported proven effective and safe multi-center NIH double-blind study (Lancet, 1994), patients were not hearing about the treatment from rheumatologists.

In the mid-1990s, a static Web site was established in order to reach others and promote the mission and patient resources.

More patients using the internet to access information and less meeting in person – eventually Chapters were discontinued and Web site APNCs were established (Antibiotic Protocol Network Contacts).

An interactive Discussion Forum (Bulletin Board) became a vital resource (3 volunteers worldwide).

Peer-to-Peer Network an important component supporting the patient information on the site.

Became all volunteer effort with paid Web consultant.

Ended the sale of literature, protocol and study information, etc. -- all free on the site.

No paid staff, lessening of administration and need for fundraising for costs such as mailings.

Eliminated hard-copy newsletters – now periodic E-Bulletins with medical-related studies, Road Back information and articles about patients’ progress on the treatment (more than 4.500 subscribers).

Commissioned the landmark Harris Poll of patients using antibiotics who reported positive results with treatment.

Supported clinical trials and basic research.

Funded media information campaigns targeting national and community newspapers.

Presence at medical meetings and health fairs.

The Road Back Foundation is an all volunteer effort and takes no industry contributions. Finding the time and making changes to the Web site can be difficult.

Locating trusted and savvy volunteers to monitor the site or conduct chats is an on-going challenge.

An appeal to lessen the number of locations on the site that donations are sought has resulted in very few contributions given.

No capturing of names and addresses as no administrative staff – no snail mail effort to fundraise.

Commitment of volunteers to provide useful information and support that is not found elsewhere.

Millions of hits since inception (most lurk on BB). Countless numbers have benefitted from a treatment that is effective, mild in side effects, can be inexpensive and proven safe.

Site testimonials prove Web site is a vital connection for those who are struggling with chronic diseases such as rheumatoid arthritis.

Antibiotic treatment is diverting patients from using newer and more costly treatments so the Road Back Web site may be viewed as a challenge to industry profits.

Web sites create opportunity for outreach but also for potential attack from some who might not want your mission to succeed.

Finding enough voices to respond and with a consistent message can be difficult.