I am posting this to NATIVE-L with the full knowledge that diabetes is one
of the most prevalent health problems among Native Americans, as well as among
indigenous groups in many other countries. This movement is the first really
hopeful one I have seen take shape in my own 13 years of diabetes, and I want
to share the good news with all my native friends! Please FEEL FREE TO FORWARD
this announcement to any list where you think it will be of interest, post a
copy on a local bulletin board, or give it to a friend. We need all the help
we can get! Thank you.
--Liz
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Project Cure Announces a new, non-profit organization,
The INTERNATIONAL FAMILY of DIABETICS, INC.
The IFD, Inc. is a worldwide non-profit organization of, by, and
for diabetics. Its goals are to provide a CURE for diabetes within 10
years and provide significant improvements in care and life styles of
diabetics while this work progresses. Membership in IFD will be available
to diabetics and their family members. Noone may serve as an officer in
the group who is not diabetic.
SERVICES - a registry of proven health care professionals nominated
by members
- a free Fax network for distributing information
- publishing services for educational materials
- establishment and operation of support groups
- a non-profit mail order pharmacy
- lobbying efforts and legislative updates
- medicine and supplies for those unable to afford them
FUNDING - The first task of the organization will be to raise operational
funds to establish all of these services; later efforts will raise funds to
establish research programs with only one aim: to find a CURE for diabetes.
This goal requires volunteers with the will, energy, and leadership necessary
to raise sufficient funding to begin our work. The first few months will
require people who are willing to work on a volunteer basis entirely.
Contributions will be solicited first for operational funds. When fund
raising begins in earnest for Research and Services, those and the
Operational funds will be maintained in separate accounts. Donations
at that point may be restricted to any one of these three purposes.
PERSONNEL, SKILLS, & TALENTS NEEDED
The project will need people with all kinds of skills and talents,
beginning with contacting businesses for donations. Later we will need
people to knock on doors, and call potential donors and members, people
with technical skills, such as desk top publishing, and with organizational
and supervisory skills, information gathering skills, teaching skills,
writing skills, and a host of others. The core of this group of people
will be drawn from members of the Diabetes and Hypoglycemia Forum on
Compuserve and supplemented with volunteers from outside the forum.
Eventually, as funds allow, some paid positions will be available,
especially those requiring full time work and coordination of large
groups of people. For now, however, everyone will be asked to donate
their time and efforts to get this project started.
If you have skills and talents to volunteer for this purpose, you may
make your willingness known via email to:
Peter Prime 73710.2242@compuserve.com
or Elizabeth Pollard 72457.1560@compuserve.com
(also note email addresses below)
FURTHER DETAILS ON PROJECT CURE AND THE IFD ARE OUTLINED
IN THE PLANS WHICH FOLLOW.
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Project Cure
A 10-year Plan for the Eradication of Diabetes
This is an outline designed to indicate a progression of events and
circumstances that will evolve into a world-wide absence of diabetes within
a ten-year period. It should be noted here that, in the opinion of the author,
once cures are found they will be immediately utilized everywhere in the world
except for the United States because of the United States Food & Drug
Administration regulatory delays, delays which will amount to allowing
1.5 million people to die while each cure goes through five years of trials
to prove it is "safe". Part of the requirements of this plan involves a very
strong committment to the reduction, by law, of the time between introduction
to the F.D.A. and the availability for use in all diabetes patients. This
plan designs a means of working successfully toward cures, but cannot hope to
determine when, if ever, such cures will be available to Americans.
This plan is presented to the staff and members of The Diabetes Forum on
CompuServe Information Service for their suggestions for its improvement.
This is not to say that this plan is permanent. Circumstances and a continual
series of events will cause changes once the project is under way. This is
basically a starting point.
1. Project Cure; Definitions of Purpose
1.1. The Cures
The major portion of this plan is designed to lead us to the point at which
cures are attainable. That point in time will occur when fund-raising efforts
have yielded an appropriate amount of funding, that amount will be determined
as a process, not an end result. The most we can hope for is to acquire the
funds from private donors, and then motivate scientists and medical scholars
to do the work necessary to determine the solution to this horrendous problem.
So the first major goal in the acquisition of a cure for diabetes is a
financial one, and one that will, itself require an operational plan to
accomplish.
As in all projects the first goal must be that of the acquisition of the
people needed to accomplish our objective. They will be volunteers, and will
be led by the good members of the Diabetes Forum on CompuServe.
1.2. The intermediate improvement of the lifestyle and care of diabetics
prior to the various cures of the many diseases called diabetes mellitus.
It is important to understand that of the total estimated population of
diabetics, about half of them are undiagnosed, and a large number of the
diagnosed are in severe denial.
1.2.1. The incorporation of the International Family of Diabetics, and the
acquisition of tax-exempt, non-profit status.
1.2.1.1. Full Membership is limited to diabetics. Only Full Members
can hold office or vote at meetings. This "Family" is of, for and totally by
the diabetics. Full Members pay an annual fee of $15.00 (about 3 weeks cost
of insulin or one weeks cost of blood glucose strips for a full year's
membership) which will be waived if member does not have the ability to pay.
Since it is the purpose here to bring in all diabetics, leaving some out
because they cannot afford to pay is ridiculous. However, we will encourage
those who do not pay in money to contribute in volunteered time and effort.
1.2.1.2. Medical Professionals can become Professional Members who pay
an annual fee of $1,000.00, and/or volunteer to aid a support group or groups
free of charge for the year. This category of membership also places the
Professional Member on a mailing list to receive all research and scientific
papers and information that the IFD makes available.
This category will include Doctors of Medicine, Registered Nurses, Licensed
Practical Nurses, Certified Diabetes Educators, Nutricians and Dieticians and
any others the Board may desire to include.
IFD will not, in any way, censor any papers... all will be available if the
source of the information is normally recognized by the medical profession.
The IDF does, however, reserve the right to add it's own opinion, or contrary
professional opinions to all the submissions.
1.2.1.3. Family members of diabetics and "significant others" can be
Family Members with the same fee arrangements as for Full Members. Family
Members will be invited to join support groups, as well, and will be guided by
materials published for that purpose by IFD, or by an Official Professional
from the same area.
1.2.1.4. Members of the press and electronic media who are diabetic are
Media Members, and will be the primary group with full access to all of the
IDF research and files with the same fee arrangements as for Full Members.
Media Members in this category can eliminate any need for fees by maintaining
a reasonable flow of articles or electronic pieces in the local media.
1.2.1.5. Members of the press and electronic media who are not diabetic
are Associate Media Members, and will have access to the IDF research and
files with the same fee arrangements as for Professional Members. Local
members in this category can eliminate any need for fees by maintaining a
reasonable flow of articles or electronic pieces in the local media that
enhance the public's knowledge and understanding of diabetes.
1.2.1.6. Elected Officials from the State and National Legislatures
who are diabetics will be Legislative Members with an annual fee of $500.00.
This fee can be waived if the Legislative Member holds at least four meetings
each year with the purpose of informing the Membership of any laws, bills or
other proposals which could positively or negatively affect diabetics and/or
their families. Legislative Members are under NO obligation to vote, in
session, in any way but by the light of their own conscience.
1.2.1.7. Elected Officials from the State and National Legislatures who
are not diabetics will be Associate Legislative Members with an annual fee of
$1,000.00. This fee will be waived if the Associate Legislative Member agrees
to attend two IFD seminars each year designed to educate this category on the
disease, it complications, ramifications and costs, and the general economic
structure of the diabetes maintenance industry. Associate Legislative Members
are under NO obligation to vote, in session, in any way but by the light of
their own conscience.
1.2.2. The establishment of at least one volunteer in each country, state and
province who will serve as that area's IFD Coordinator.
1.2.2.1. The IFD Coordinators wil be chosen, initially, from the group
of active participants in the Diabetes Forum on CompuServe. If such a member
is not available, the IFD Coordinator will be selected from the group of
members in the area being covered who wish to assume leadership roles.
1.2.2.2. IFD Coordinators will be trained in their homes with a short
home-study kit produced by the IFD Publishing Group (see 1.2.4.).
1.2.2.3. As funding is available, all IFD Coordinators will be invited
to biannual meetings, expenses paid by IFD, for further training, motivation
and socializing! This group will be a cohesive unit, teaching the same things
in the same way, and these meetings are intended to enhance that educational
objective.
1.2.2.4. IFD Coordinators are also expected to be or become familiar
with the legislators in their area who might be interested in our goals and
providing assistance in those goals. Wherever possible, these legislators
will be enlisted as Associate Legislative Members or Legislative Members.
1.2.2.5. In each area the IFD Coordinator will report to the home
office whenever his or her legislative contacts report anything directly
involving our goals. That information will then be disseminated throughout
the organization so that everyone is familiar with what is going on in state
capitols and in the Congress.
1.2.2.6. The IFD Coordinator, or a member delegated for this task, will
establish a registry of physicians, endocrynologists, nurses and CDE's who
have proven through the care of Members that they can and will provide the
best possible care and advice while motivating the diabetic to take
responsibility for himself or herself. Members may nominate a professional
with whom they have experience.
1.2.3. The production of a complete training program for all IFD
Coordinators, and the distribution of same. This would include the following:
1.2.3.1. How to enlist the public's support in the location of
diabetics, and even more, how to locate diabetics yourself.
1.2.3.2. How to establish support groups wherever there is a
concentration of four or more diabetics.
1.2.3.3. How to include the local physicians, of whatever specialty, in
our process as Professional Members of IFD.
1.2.3.4. How to build all of the people found in your area into a
cohesive organization that understands fully the goals of IFD and will work,
to the extent physically possible, toward the attainment of those goals.
1.2.3.5. How to enlist as many of the members in your area as possible
in our fund-raising efforts. Training in these efforts will be provided on
video and in handbooks from the IFD Publishing Group.
1.2.4. The establishment of the IFD Publishing Group, comprised of members
interested in writing, illustrating, publishing and/or producing all of the
IFD's printed and broadcast support and promotional materials.
1.2.4.1. Members who are part of this group will work from their homes
on their computers, and will communicate their work to the home office via
telecommunications.
1.2.4.2. Members who have had prior experience in desktop publishing
will be encouraged to donate their time and expertise to assist in this area.
1.2.4.3. Members in this group will be guided in their work by a
professional in the home office assigned to assist the group.
1.2.5. The establishment of the IFD Funding Group, comprised of members who
are knowledgable in and capable of raising funds for the goal of a cure for
diabetes.
2.0 Project Cure: Schedule
It should be clearly understood that the entire schedule is dependent on
the acquisition of initial funding for activities to begin.
2.1. Identification of the need for funding in both time and amounts.
2.1.1. Funding requirements for the scientific aspects of the acquisition
of a cure for diabetes.
2.1.1.1. Major funding requirements are estimated to be in the area
of $1.0 billion, U.S. However, any estimate at this time is truly a guess and
by its very nature inaccurate. The work required to clarify the amount
actually required will take place during the coming year.
2.1.1.2. Funding for the construction of a research center will
be acquired separately, and will include the real estate and construction
costs as well as the cost of equipment required to do the research. An
estimate of that amount will be available by August 1, 1994.
2.1.2. Funding requirements for the construction of a national and
international organization of diabetics. In Section 1.0 of this outline the
personnel and logistical requirements have been established. We are hopeful
that a more precise figure will be formulated based on fact and on a more
lucid view of the requirements and costs, but for the present time it is
believed that it will cost $200,000 U.S. to get the organization established
so that the support network and fund-raising can commence.
2.2. Identification of the people who will be the leaders in the
organization, originally to be taken from among the leaders on the Diabetes
Forum on CompuServe. An announcement will be made on the Diabetes Forum on
CompuServe relative to the formation of the IFD, its goals, requirements, etc.
and will ask that people interested in being a part of this project contact us
via the forum. Assignments of positions and job assignments will be made
beginning the week of February 1, 1994. Every attempt will be made to match
people, their experience, expertise and time available to the tasks identified.
2.3. Identification of the need for support services, published materials,
etc. This will be accomplished through an on-going feedback program involving
the IFD Coordinators. Being closest to the members, these people will have
the best handle on what is needed at any given time.
2.4. Establishment of a major Fax-On-Demand system which will allow anyone
requiring or wishing further information on the disease, its consequences, its
complications, its treatment, etc. to call an 800 number and have the required
information faxed to them immediately. This is a secondary priority and will
require a good deal of volunteer effort to make all of the documents that are
appropriate in the Forum's Libraries easy to read and presenting an attractive
look into the organization.
2.4.1. The FOD system will be broken down into major areas and
implementations, such as scientific papers, member information (written in the
language of the requestor wherever possible) and media information.
2.4.2. The copyright laws of this and many other countries will require that
we have, on file, written approval from each copyright owner for the
republication of the information via our system. This is a large task, and
will require a number of people to write letters, manage files, etc.
2.4.3. We will be looking for someone with extensive Library and
Technological experience to manage this entire function.
2.5. It is the intention of the leadership of IFD to establish a U.S.
mail-order pharmacy, based in part on the one AARP has established, except
that pricing will be based on the fact that it will be a non-profit operation.
The fact that we could easily have in excess of 1.0 million members utilizing
it would mean that we should be able to purchase in quantities large enough to
provide the lowest prices in the United States. Implementation of this
operation on an international scale is unlikely due to the difference in laws
from country to country, however, mail order of nonprescription diabetes
supplies and assistance to countries where supply shortages exist is
contemplated. From a scheduling standpoint we expect this service to commence
twelve to eighteen months following the initiation of activity.
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Elizabeth Pollard
Systems Librarian Internet: pollarde@email.uah.edu
University of Alabama in Huntsville Compuserve: 72457,1560
Huntsville, AL 35899 Phone: (205)895-6313
SYSOP*Diabetes & Hypoglycemia Forum on Compuserve
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