We have listed below the early steps that we took to begin
formulating and implementing our program; we hope they might be of
some small help by way of suggestion for other parents attempting
a similar venture.
Write down exactly what the goals of the organization will
be. These should be typed and duplicated as they will be your
first public relations tool and will help recruit endorsers.
Draw up a model of the organization, including roughly the
major areas of responsibility as you see them. These will grow
and change; we found it easier to work on one or two areas
slowly rather than attack on too many fronts. It is not
advisable to appoint positions too firmly until the organization
has really begun as individual strengths will become apparent.
Outline specifically any plans for publicity, special
programs, sub-committees, community involvement, etc. that you
can visualize.
Contact medical personnel whom you know to be interested in
treating cleft lip and palate children. Sell your idea and their
involvement. This step is vital -- you need solid backing form
highly qualified medical people from at least one reputable
hospital to begin; however, you will note that Prescription
Parents is not affiliated with any hospital nor does the
organization endorse any particular medical treatment. The more
diversified the areas of interest and their medical
affiliations, the stronger you organization will be. Some of the
Advisors will be more active than others; for example, some may
be willing to help you with public appearances, or to speak at
meetings, etc., while others may only be willing to lend their
names.
Also, ask these specialists to recommend a few competent
parents who could work together to set up a loosely organized
group to help with the leg work.
After working with physicians and specialists to receive
their endorsements, ask them to send out letters for you to
their patients (in this case, probably their parents0 whom they
have treated in the last five or ten years, inviting them to a
meeting. Give yourself plenty of time between this step and the
actual meeting as you and the few parents recommended to you
will have to work on public relations in the interim. You will
also have to make careful arrangements as to the meeting place,
etc. This can probably be most easily handled by working closely
with a few of the most enthusiastic physicians.
Contact any media you can about the upcoming meeting --
emphasize the uniqueness of your idea (i.e., parents working
with medical professionals to become involved through
understanding in the development of a child afflicted with the
second most common birth defect in the U.S., yet one which
usually receives little public attention in terms of funding,
educational programs, etc.) We booked several television talk
shows, particularly a local medical program which brought us
many members. These programs should be arranged so that you and
one or two of the key medical personnel can appear to explain
the goals and possible programs. Allow enough time to set up
these programs -- they are usually booked anywhere form one to
three months in advance. Try to synchronize the appearance with
your first meeting, to which the Medical Advisory board should
be invited, so that they occur within a week of each other. In
addition, you can set up press interviews for yourself and
several of the doctors, possibly working with the Public
Relations Department of the hospitals involved. These interviews
have to be arranged with the utmost of care. They should also be
appropriately timed for the first meeting. For more local
papers, you can simply submit a press release which is
interestingly written and gives pertinent information.
For your first meeting:
designate someone to be responsible for registration of
parents as they arrive, using index cards -- these will become
your working mailing list.
be sure that as many as possible of your Medical Advisors
can attend and would be willing to speak and answer questions.
make appropriate arrangements for coffee and refreshments.
You are now well underway. Using your ideas for committees,
etc., you will have to introduce these to the parents and accept
their suggestions for interest areas. You might solicit
volunteers at this first meeting, but do not assign
responsibilities until you are more organized. Now begin to work
with volunteers to plan programs and get your plans into
operation.
The Newborn Program as described in our brochure and our aims
and Goals is an integral part of our program that requires
careful organization by a competent person. We carefully
assessed ourselves and our strengths before assigning the
chairmanship of this program. The Chairman of this program,
working wit the Officers, assembled teams of mothers who would
be willing to go through a training program and then to work
with new mothers. In choosing these mothers, care must be given
to work with the physicians who hopefully will recommend your
services; also attention must be given to geographical
distribution and to the hospital center providing care. As much
as possible, it is preferable to choose mothers form the center
treating the newborn to work with the individual case. In
setting up the Newborn Program, we were careful to establish
guidelines for mothers in talking with new mothers. We are not
physicians, nor are we qualified to dispense medical information
or advice. Our sole function is supportive: to help with feeding
and at-home care by giving tips which helped us in caring for
our infants.
Your imagination is your guide in setting up activities for
publicity, fund-raising, etc. This is depend upon your goals.
You will obviously need money for office supplies and ailing at
the least. In Boston, we ran a raffle, worked with local
celebrities and teams, most notably the Celtics, and with
government representatives.
After you have determined your basic program, have some
funds, and can see the forest for the trees, you might wish to
design a basic brochure to explain who you are and what you do.
If you find yourself attracting large numbers and funds,
etc., you might consider incorporating as a tax-exempt,
non-profit organization as we did. Prescription Parents is
governed by a Board of Directors comprised of both parents and
professionals; we have the services of an attorney who
generously donates his time and a member who is a Certified
Public Accountant who handles tax matters, etc. for us. In
addition, once our mailing list rose above 200, we invested in a
bulk permit which cut costs considerably. (Also, at this time we
found methods to streamline our mailing by using computerized
cards to print our envelopes, etc.)
As you grow, you might wish to contact federal and state
agencies to determine what is available in the way of funding
and service, both medical and educational, in your state. We
have been most active advocates in these areas and have found
most agencies most cooperative and willing to listen to us; many
of them list us as a referral service.
You might also contact parent groups representing different
problems as you may find you share similar concerns regarding
the quality of public medical and educational programs.
You might wish to form a speakers' bureau where parents would
be willing to speak to various groups about their concerns. We
have addressed numerous students, teachers, medical interns and
residents, student nurses, and professionals interested in the
parent's perspective.
You should register your group with the American Cleft Palate
Educational Foundation, 331 Salk Hall, University of Pittsburgh,
Pittsburgh, PA. The ACPEF is a non-profit foundation established
by the American Cleft Palate Association to promote public and
parent education regarding the problems of our children. They
maintain a list of all parent groups in the country and from
time to time solicit opinion from them on a number of topics.
There is also the National Cleft Palate Foundation, 1829 East
Franklin Street, NC 27514, 800-24-CLEFT, e-mail:
cleftline@aol.com.
After we had begun and got our feet wet, we started a
newsletter which initially contained announcements about the
internal workings of Prescription Parents, but which has grown
to include information from professionals of interest to
parents, as well as book reviews, and basic information about
services and programs in Massachussets.