Founded in 1987 by Clifford Ashworth:
Clifford Ashworth championed the earliest roots of the Support Groups with his efforts to establish contacts with other patients with Relapsing Polychondritis.
Mr. Ashworth became ill in 1981 and was quite remarkably diagnosed with RPC only 7 weeks after his initial symptoms were documented. He was fortunate to receive care at Pontefract General Infirmary in Yorks England where a dermatologist who had already seen two previous Relapsing Polychondritis (RPC) patients was in practice.
Upon discovery of RPC's rare occurrence, Clifford embarked on a mission to locate others who shared his ailment. With the help of his wife Nellie, he wrote letters to the majority of dermatologists and rheumatologists practicing in the UK and submitted correspondence to The British Medical Journal, The British Journal of Dermatology and the New England Journal of Medicine.
Mr. Ashworth's submissions were published in each of the three journals. 57 respondents came forward and 14 joined his newly formed Relapsing Polychondritis Support Group.
The Relapsing Polychondritis Support Group flourished and in 1986, through a friend in Philadelphia, USA, Clifford made contact with a professor of dermatology who expanded the search for Relapsing Polychondritis patients and support groups into the United States. The American dermatologist soon reported back to Mr. Ashworth that a U.S. support group had yet to be formed.
Undeterred, Clifford obtained an article cut from a United States publication that introduced him to the National Organization of Rare Disorders (NORD). Through NORD's network of information Clifford was able to locate a handful of RPC sufferers residing in the United States. Clifford introduced these fortunate Americans to the United Kingdom support group and welcomed them as members.
Dr. Hedly Berry, Consultant in Rheumatology and Rehabilitation at King's Hospital, London, took an interest in the group and agreed to be its advisor. Meetings were held once a year in London.
The son of one of the American members, Leo Miller, discovered Dr. Trentham and his RPC research program. Leo visited Dr. Trentham and decided to get involved by supporting the doctor's research. Leo Miller, along with Diane Graham, established the Polychondritis & Rheumatoid Arthritis Research Endowment Fund to assist with donations to Dr. Trentham's research. Many of the support group members in the UK sent donations. Leo Miller died in 1988.
With today's technology and Internet access, it is becoming difficult to appreciate the exhaustive amount of time, effort and expense Clifford invested into setting up the support group. Manual research, letter writing, mail delays, and long distance phone calls were common communication challenges that Clifford faced to develop the resources that made the support group a success.
Sadly, Clifford Ashworth died of chronic airway failure in May 1989. He left in his legacy the core of a growing support network that spanned nations.
In the absence of Clifford Ashworth, the support group continued under the capable lead of Christine Finnett. It was during this era in 1990 that Dr. Trentham traveled to the United Kingdom and attended a support group meeting in London. He explained his research, which at that time was centered on compreparing quantities of a protein derived from cartilage which was hoped would have therapeutic effects on this disease after oral administration.
By November of 1995 there were 16 members from America and Canada. The members of the group agreed it made sense to establish a USA based group.
Shirley Colbath stepped forward and developed the Unitied States version of the group, The Support Report. It was Shirley's Mother who came up with the name. The groups remain close in purpose and mutual support exchanging newsletters and newly gathered information.
Christine Finnett continued to lead the support group in the United Kingdom until her death from respiratory failure in November 1998.
Anne Colman is the support group's current leader and continues the fine efforts of her predecessors.
We offer our gratitude to Clifford Ashworth for his pioneering effort, foresight, and a dedication that he shared with the world.
To those who followed him, and those who continue today, have created a fine legacy that has benefited the worldwide Relapsing Polychondritis community.
