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The
Myelodysplastic Syndromes Foundation Honors Congressman Joe Moakley
The
Myelodysplastics Syndromes Foundation would like to acknowledge
the loss of politician and humanitarian, Congressman Joe Moakley.
When
he was diagnosed in February with MDS, Congressman Moakley courageously
announced his condition to the public. Despite the severe prognosis,
his prepared statement was punctuated by his ability to be light
hearted. Notably, he commented at the time, he considered himself
to be fortunate to have had the virtually life-long experience of
serving the people of his community. Congressman Moakley's ability
to hold his powerful political position with humility is viewed
as the key to his popularity.
Congressman
Moakley was a true man of the people. The MDS Foundation shares
the grief of his family, friends, co-workers, and constituents at
his passing.
The
Myelodysplastic Syndromes Foundation is increasing its efforts to
reach patients and to educate physicians and the public regarding
mylodysplastic syndromes (MDS) with the goals of providing increased
patient support and outreach through stepped-up efforts at fund
raising for research patient advocacy.
MDS
is a primary disease of the bone marrow. The bone marrow loses its
ability to produce normal cells. No true data exists, except in
narrow population studies, regarding the incidence of this disease
worldwide. Recently, the Foundation began the first patient registry
for MDS at the University of Rochester Cancer Center, Rochester,
New York. The registry will provide the first good epidemiological
and prevalence data through the Foundation's Center of Excellence
program. There is no curative treatment for MDS, with the exception
of bone marrow transplantation, and roughly 70% of all patients
with MDS succumb to the complications or progression due to acute
myeloid leukemia (AML). MDS affects all ages, from children to adults,
with the highest prevalence in those over sixty years of age.
Some of those that have been affected by MDS have written about
their experience. Carl Sagan told his story of MDS and bone marrow
transplant in "Parade" magazine. He passed away from complications
after the article was published. Boris Molenko, the pro wrestling
great, father of Jody Simon (MDS Board Member) and Dean Molenko,
currently with the World Wrestling Federation, passed away from
MDS. This disease touches many peoples' lives including my family.
We lost our son, Erik, in 1996 to MDS. He was 21 years old.
The
Foundation would like to enlist the help of the media in providing
information to the public and physicians nationwide. Your help would
be greatly appreciated.
For
an interview please contact the MDS Foundation:
Phone within
the US: 1-800-MDS-0839
Outside the
US only: 1-609-298-6746
Fax:
1-609-298-0590
or write:
The MDS Foundation
P.O. BOX 353
Crosswicks, NJ 08515
Thank you in advance
Edward
S. Johnson
Chairman, Patient Advocacy Committee
The MDS Foundation
News from
the Patient Liaison
Patient
Liaison
Excerpts
from the Register News
September 9, 1999, Bordentown, NJ
Internet
Helps Reveal Local Woman's Work With International Group
Reporter's
Notebook - Michael Maugeri
With
the Internet being the vast expanse that it is, it's easy to be
surprised by the sheer volume of what's out there to discover and
learn.
This learning can also come on a local level. For instance, when
I recently entered the names of the towns of our newspaper's local
coverage area, I discovered an international organization directed
by a woman from Crosswicks, NJ, Patient Liaison. Mrs. Heptinstall,
BSN, RN, operates the Myelo-dysplastic Syndromes (MDS) Foundation
from her business office.
As a board member, Mrs. Heptinstall takes her place among such people
as Dr. John Bennett of Rochester Cancer Center, Rochester, NY; Professor
Terry Hamblin, of Southampton University, Bourne-mouth, England;
Professor Pierre Fenaux of the Service des maladies du Sange in
Lille, France; Dr. G.J. Mufti of King,s College London, England;
Dr. Hussain I. Saba University of South Florida, Tampa FL.; Dr.
Franz Schmalzl, University Hospital of Innsbruck, Austria; Dr. Charlotte
Neimeyer, University Children's Hospital, Freiburg, Germany; and
Robert Weinberg, Esq., Pepper Hamilton LLP, Philadelphia, PA.
According to the MDS Web site (http.\\www.mds-foundation.org),
the Foundation was established by a group of international physicians
and researchers to provide an on-going exchange of information relating
to MDS. Until the Foundation was formed, no formal working group
had been devoted to the disease. "One major goal of the Foundation
is to establish an international information network," the
Web site stated. "This network is intended to give patients
contact names for available programs, share new research and treatment
options, deliver information and educational support for both physicians
and patients, and, ultimately, provide funding for international
studies of MDS."
Mrs. Heptinstall runs a medical communications company, working
with pharmaceutical companies to create medical publications and
providing medical education. During her consulting travels, Mrs.
Heptinstall became acquainted with Dr. John Bennett who talked about
creating a formal group dedicated to MDS and asked her to help coordinate
an annual MDS symposium. It was during the third such meeting in
Chicago that a survey of attendees indicated a strong interest in
establishing a permanent working group of scientists and patient
advocates. Other symposiums have been held in Barcelona and Prague.
Future symposiums are planned in Sweden in 2001, Israel in 2003,
Japan in 2005 and France in 2007.
Mrs. Heptinstall directs the Foundation without a fee. "We're
tax-exempt and operate on membership dues and donations from patients
and pharmaceutical companies," she said.
Literature available from the Foundation, written by Dr. John Bennett
and Dr. Peter A. Kouides provides a description of MDS. Bennett,
Professor of Oncology, Pathology and Laboratory Medicine at the
University of Rochester, is Chairman of the Board of Directors of
the MDS Foundation.
In MDS, the bone marrow loses it ability to produce normal cells
of one or more types. The diseased cells are called myelodysplastic
cells. "The bone marrow's failure to produce normal cells is
a gradual process and the elderly often succumb to other diseases
before MDS takes it toll," the literature states. "It
is possible, however, that in time bone marrow will fail completely,
making patients unable to fight infection or prevent bleeding."
The doctors also said that MDS could progress to acute myeloid leukemia
(AML), which doesn't respond well to treatment and patients need
special treatment when this occurs.
There are five categories of MDS, each with its own personality
and conditions. The median survival rate for these categories ranges
from six months to 55 months.
Exact causes of MDS are unknown, although the literature said some
evidence suggests certain people are born with a tendency to develop
MDS. Mrs. Heptinstall said research is looking into some factors
that pre-dispose people to the disease. According to an MDS booklet,
exposure to certain environmental chemicals can trigger the disease
but it is not clear which chemicals, aside from benzene, are implicated.
Benzene
is a colorless liquid that vaporizes and ignites easily, and is
obtained chiefly from coal tar. It is used for removing grease in
motor fuels and in making dyes and synthetic rubber.
Treatment of MDS must be well directed, according to MDS literature.
"To date, about 500 MDS patients have undergone bone marrow
transplantation," it states. Almost all of them have been under
the age of 40. Transplants are done up to the age of 60 years.
The
Foundation provides Ms. Heptinstall with a full-time employee who
deals exclusively with the FoundationÍs business, Laura Ciesielski,
RN of Chesterfield.
"I
talk to patients about their diagnosis and send them information
about MDS," Ms. Ciesielski said. "Many people who are
diagnosed with MDS have never heard of the disease before, their
diagnosis is even more frightening because it's unknown. Just the
ability to tell them that I have information about their disease
can provide comfort. Being able to talk to a person is also a comfort."
Ms. Ciesielski also said that the Foundation is working to set up
support groups. So far, groups have been established in California,
Florida, Washington and North Carolina. Patients can also leave
messages on the patient web site for each other (www.mds-foundation.org).
"While
MDS can be a troubling diagnosis," Mrs. Heptinstall said, "it
is essential to continue research in order to unravel the mystery
of the disease." She said the Foundation has created a patient
registry filled with information about each personÍs diagnosis and
condition to assist further research. |
