New Japan Representative

[Guest guest]

Japan now has a PAI chapter. The Representative for Japan is Dave Mayer; his

email address is: mayer@...mayer@...

Dave has been a member of the PAI for

several years. Here is what he has to say,

" Yes, I am willing to serve as the representative for the Japan Chapter of

Pancreatitis Association International.

......... ideas about what (the Representative) our roles could be.

(1) First of all, the representative is a contact person for people with

Pancreatitis in the area.

(2) The representative gets information about Pancreatitis, what it is, how

it

can be treated, etc., to those with the disease and as much as possible to

the general public when a situation arises.

(3) The representative could collect and pass on information about reliable

doctors in the area, about financial and medical support foundations or

government agencies. (4) Sometimes the representative's physical presence may

be needed to assist or support people in times of hospitalization or

depression.

(5) In other words the representative is the living contact between the

individual member and the larger organization.

(6) The representative makes the resources of the organization present to the

individual members.

(7) From reading the mail, it seems that some of the most active

representatives are those who have gone through a lot with this disease and

have now reached some stage where it is more or less under control. They have

shown not only a lot of compassion but have been able to give very good

practical advice to a number of sufferers who are new to the situation and

don't understand what is happening and aren't getting very good support from

their local doctors.

(8) As the information about disability and medical benefits as well as

specific information about pain management and medical treatment including

operations increases, the organization could well be a center, almost a legal

and medical unit, for those with Pancreatitis. Representatives, through their

contact with members in their areas, would keep the center up to date about

successful medical treatments and various supports available in their areas.

(9) Some members seem to be concerned about having professionals involved

since they have suffered so much from them. However, as the organization gets

bigger and bigger, and more and more information becomes available,

professionals in the medical and legal fields might be necessary for advising

how to make the best use of this information or at least following up on some

of the leads and getting more exact information that may be needed before the

information can be relied upon. At this stage also the representatives are

important for maintaining the contact between the

individuals and the organization. (Of course individuals contact through

e-mail and others respond not only through e-mail but by phone, cards, and

visits, but having representatives makes sure that no member slips by

unnoticed.)

(10) Basically the representative makes sure information gets to the people

who need it.

Karyn , RN

Founder / President

http://www.pancassociation.org

KarynWms@.../

Pancreatitis Association International

Many People, Many Faces, One Voice