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 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.