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FEATURED
ARTICLE
Debra Gill's
Remarkable Story of
Survival
Debra
Gill was given a 1 percent chance of survival;
now, she is in complete remission. READ
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FUNDRAISING
UPDATES
Teaming Up to Fight
Cancer
Team In Training Corporate Teams Generate
Benefits All Around.
READ
MORE
2009 Light The Night
National
Spokesperson
Actress Tina Fey helps
LLS raise awareness for Light The
Night® Walk.
READ MORE
LLS Neighborhood Drive
The
spring campaign exceeds its recruitment goal for
the fiscal year. READ
MORE | |
PATIENT
SERVICES
Changes to
COBRA READ
MORE
Find an appropriate
clinical trial with TrialCheck®
Website READ
MORE
LLS Launches My Personal MDS Jouney
READ
MORE
Upcoming Telephone
Education Programs READ
MORE
RESEARCH
This month, eNewsline
introduces the work of Catherine Bollard, M.D.,
Ph.D.
READ MORE
New TAP partnership
with Celator READ
MORE
ADVOCACY
Blood Cancer Research
Program Sought at Department of
Defense
READ
MORE
FROM THE
LLS BLOG READ
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 Debra Gill's
Remarkable Story of
Survival
Debbie Gill shouldn't be here
today.
The 43-year-old homemaker and
mother of four was diagnosed with acute
lymphocytic leukemia (ALL) in 2001. For a while,
she was given a 1 percent chance of survival;
now, she is in complete remission and enjoying
an active life, including volunteering and
fundraising for LLS.
"When I was lying
there, struggling to survive," writes Gill in
her new book, Living a
Miracle, "it was hard to believe my life
would ever have a semblance of normality again.
But here I am today, driving carpool, meeting
friends for lunches, taking walks with my
husband, loving my life. There is only one motto
from my tale, to never, ever give
up."
Gill, of suburban Chicago, learned
she had ALL shortly after trying to donate blood
on 9/11, an inauspicious date. The disease is
the most common - and treatable - form of
leukemia among children. But adults suffer a
much worse prognosis, according to Barton Kamen,
M.D., Ph.D., LLS's chief medical
officer.
Gill's real troubles began
during chemo. She woke up one night with
terrible stomach pains and a dark bruise on her
side.
"No one was sure what was wrong
with me," she writes. "The pain was incredible,
and I was begging for anything that would give
me relief."
Doctors eventually diagnosed
necrotizing enterocolitis, a potentially lethal
complication. She developed sepsis. Her major
organs began to fail.
"(The infection)
was killing me from the inside out, and the
blackness, or bruise, was really dead tissue
showing," Gill says.
Surgeons removed a
large portion of her intestines and surrounding
abdominal muscles. Gill jokes that if you push
in her side, you can feel her liver.
She
was kept on a ventilator and in a coma for
weeks, her doctors and family fearing that she
would never recover. Finally, Gill underwent an
experimental white blood cell transplant as a
last resort.
"I was still running
extraordinary temperatures, signs that the
infection was still rampant, but my heart was
more stable, and I could breathe independently -
baby steps, but very welcome," she
writes.
Her immune
system strengthened, Gill was still a very
sick woman. She came out of her coma paralyzed
from the neck down. Her heart had suffered
damage. She suffered from mini-strokes.
Incredibly, she recovered even from those
setbacks and finally went home.
Today,
Gill has regained all of her strength and is an
active member of her community. She and her
family, including husband Dan, have taken part
in several Light The Night® Walk events and have
raised more than $200,000 for LLS's
mission.
"I'm not a doctor," Gill says.
"I personally can't cure anything. But I can
fundraise. Every little dollar adds up to cures.
When I see those white balloons at Light The
Night, I am filled with hope. That's my
message:Never give up hope, no matter how sick
you are."
To purchase a copy of
Living a
Miracle, visit www.lulu.com and type in "Debbie Gill" in the search
tool. Profits will help LLS and the
Evanston Hospital Cancer Center.
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Teaming
Up to Fight
Cancer
Team In
Training Corporate Teams Generate Benefits All
Around
Recognizing the importance of team
building and morale, as well as the health and
wellness of their workforce, companies across
the country are encouraging their employees to
don their running shoes and tune up their
bicycles and train together as members of The
Leukemia & Lymphoma Society's Team In
Training.
Research confirms that companies that
support a cause or social issue are viewed more favorably by the
community and by their own employees. A recent
Cone Research Report states that 92% of those
polled have a more positive image of a company
that supports a cause they care about; 89% say
they have a strong sense of loyalty to their
employer when they support a cause; and 93% say
it's important for their companies to provide
them with opportunities to become involved in
social issues. Statistics also bear out the
health benefits. Benefits and Compensation
Digest reports that health and wellness programs
for employees result in a 28% reduction in sick
leave, 26% reduction in direct health care costs
and 30% reduction in costs related to workers
compensation and disability.
One company
that sees the benefit of signing on to TNT is
DJO Incorporated of San Diego. DJO has more than
30 employees signed up for a variety of events
in May and June, including the Rock 'n' Roll
Marathon in San Diego, American's Most Beautiful
Bike Ride in Lake Tahoe, and the Wildflower
Triathlon in Lake San Antonio,
California.
"I'm proud that our employees
are stepping up to support a worthy cause, while
taking on a challenge that involves pushing
themselves beyond their comfort zones," said
Matt Simons, senior vice president of finance of
DJO. "It's a win win for everybody - our company
gets productive healthy employees, while LLS
gets our support in advancing its mission of
finding cures for blood cancer and improving
patients' lives."
To learn more about
Team In Training corporate teams or to sign your
company up, contact Jennifer Grandy
at jennifer.grandy@lls.org or visit www.teamintraining.org.
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Tina Fey: 2009
Light The Night Walk National
Spokesperson
Actress Tina Fey
is lending her face and fame to help The
Leukemia & Lymphoma Society raise awareness
for one of its key campaigns, Light The
Night® Walk.
Tina Fey is an American writer,
comedian, actress, and producer. She has won
five Emmys, three Golden Globes, and three SAG
Awards. Fey is best known for her work on
"Mean Girls," "Saturday
Night Live," her impersonation of Alaskan
Governor and 2008 Republican vice-presidential
candidate Sarah Palin, and her work on "30
Rock," a situation comedy loosely based on her
experiences at "Saturday Night Live." Fey was
selected by Barbara Walters as one of America's
"10 most fascinating people of
2008."
As national spokesperson for the
2009 Light The Night Walk, Fey has filmed a
public service announcement and lent her image
to brochures, email blasts and other publicity
materials.
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LLS
Neighborhood Drive
The spring
campaign for The Leukemia & Lymphoma Society
National Neighborhood Drive is well under way
and already exceeding its recruitment goal for
fiscal year 2009.
Between the fall
campaign and the current spring campaign, the
program, in which volunteers seek donations from
their neighbors and friends, already has
recruited more than 630,000 people with a goal
of raising $15 million for the fiscal year.
Each volunteer receives a kit in the
mail which includes a list of approximately 12
names of people in their neighborhood. The kits
contain envelopes to mail to the neighbors, and
pink envelopes that the volunteer self-addresses
so the donations can be sent back to the
volunteer, who then sends them on to LLS. Each
kit has a goal of raising
$35.00.
"In these difficult
economic times, this is an achievable goal,"
says Marie McDonough, LLS direct response
manager. "You don't have to give a lot to make a
difference."
In addition to being a
fundraiser, the Neighborhood Drive is an
awareness raising campaign, as each packet
includes educational information about blood
cancers and LLS.
"Neighbors asking
neighbors, family and friends is one of the most
effective ways to educate the public and
generate support to find cures for blood
cancers," says McDonough.
Volunteer
Barbara Fogarty of Newburgh, N.Y. agrees.
Fogarty, who has been volunteering with the
program for four years, says she visits each of
her neighbors personally. She also writes
personal notes to her neighbors, friends and
family. She was inspired to help by her daughter
Adrienne's battle with Hodgkin lymphoma 10 years
ago. In her first year Fogarty raised $300, and
over $1,000 in each of the three subsequent
years.
"Thanks to research funded by LLS
my daughter is alive," Fogarty says. "So even
though it's sometimes hard to ask people for
money, instead of saying I can't raise money I
said how can I not?"
To learn more about
the Neighborhood Drive or to become a volunteer
call 800-462-7831.
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 Changes to COBRA
LLS would like to remind readers of
changes to the Consolidated Omnibus Budget
Reconciliation Act (COBRA), a federal law that
gives workers who lose their jobs, and thus
their health benefits, the right to purchase
group health coverage provided by their former
employers' plans.
Typically, former
employees can remain in the group plan for up to
18 to 36 months, although they have to pay the
entire premium, a hardship for many.
Now,
under the American Recovery and Reinvestment Act
of 2009, signed into law on Feb. 17, certain
"assistance eligible individuals" qualify for a
65 percent reduction in COBRA premiums for up to
nine months. These individuals include employees
who have been - or will be - involuntarily
terminated between Sept. 1, 2008 and Dec. 31,
2009.
Those who are eligible for other
group health coverage (such as a spouse's plan)
or Medicare are not eligible for the premium
reduction.
For more information, please
visit the LLS Health Insurance
page.
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Find an appropriate clinical
trial with TrialCheck® Website
Finding an
appropriate clinical trial for patients with
leukemia, lymphoma or myeloma has become much
easier with the TrialCheck®
Web site,
a clinical trials search service that offers
users immediate access to listings of
all blood cancer clinical trials.
TrialCheck, launched in collaboration
with the Coalition of Cancer Cooperative Groups
(CCCG), offers quick access to the most current
list of leukemia, lymphoma, myeloma and related
blood cancer clinical trials currently underway.
The service gives patients and caregivers
greater ability to explore cancer clinical
trials as a potential treatment option at time
of diagnosis and throughout the treatment
process.
Replacing an earlier LLS search
tool, TrialCheck contains more than 4,000 cancer
clinical trials from Cooperative Groups, the
National Cancer Institute, academic centers,
pharmaceutical and biotech companies. TrialCheck
is updated on a daily basis with new
information.
To use the TrialCheck service,
patients answer a short list of questions before
receiving a list of clinical trials targeted to
the patient's diagnosis, disease type, stage and
ZIP code preference. Patients can also receive
telephone support from LLS's Information
Resource Center, (800) 955-4572, where trained
specialists also use TrialCheck.
"TrialCheck allows us to give
patients and their families more comprehensive
services around clinical trials," said Anita
Welborn, senior director, Patient Services
Reimbursement Programs. "Clinical trials are an
exceedingly important part of patient care and
our search for cures."
For more information on our
Clinical Trial offerings, view these featured LLS Clinical
Trials.
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 New MDS
Resource
Patients and families
impacted by myelodysplastic syndromes (MDS) have
a new LLS Web resource to turn to: My Personal
MDS Journey, a
personalized and interactive
program.
My Personal
MDS Journey follows
the personal stories and experiences of Charles,
an MDS survivor, and Dorothy, his wife and
caregiver. You can follow Dorothy's perspective
as wife and caregiver or you can hear the
patient's view. Stephen Nimer, M.D., of Memorial
Sloan-Kettering Cancer Center, provides expert
insights along the way.
Based on your
responses and selections,your session will
become a dynamic experience that you can save
and access at any time. This program, supported
by an unrestricted educational grant from
Celgene Corp., joins My Personal Clinical
Trials Journey, My Personal CML Journey and My
Personal Lymphoma Journey. Visit LLS's
Interactive Personal Journeys Web
page for more
information.
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Upcoming Telephone Education
Programs
(all
programs are free)
What: Acute Myelogenous
Leukemia (AML): Emerging Treatment
Approaches
When:
Wednesday, April 15, noon - 1 p.m. ET
Guest Speaker:
Judith Karp, M.D., The Johns Hopkins
University
Register online
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We're pleased to highlight a new LLS
blog post from our Web site, www.LLS.org, every
issue. This month:
Spotlight
on the Information Resource Center
This
last week we sat down with Liz, one of our
Information Specialists in the Information
Resource Center (IRC). Liz has worked at The
Leukemia & Lymphoma Society (LLS) for nearly
two years interacting directly with patients,
caregivers, medical professionals, and anyone
else that contacts us with questions about blood
cancer.
READ
MORE
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Catherine
Bollard, M.D. Ph.D., Baylor College of Medicine,
is doing work in immunotherapy for relapsed
Hodgkin lymphoma patients. She is a recipient of
an LLS Career Development Program
grant.
What is the biomedical
problem/issue that you are trying to
resolve?
We are working to help
lymphoma patients' immune systems fight their
cancer better. We previously made immune cells
called T lymphocytes into selective
cancer-killing / "cytotoxic" T-cells (CTL) and
used them to successfully treat some lymphoma
patients. Our strategy is one of various
new treatment approaches that are broadly called
"immunotherapies." Our anti-lymphoma CTL were
safe but not always effective in patients with
Hodgkin lymphoma. The CTL can fail because
lymphomas, like many cancers, release a chemical
called transforming growth factor-beta
(TGF-beta) which stops the killer immune cells
from working properly.
What is novel or
innovative about your approach?
We are now testing a countermeasure
to make our T-cells work better in patients by
genetically changing the CTL so that they are no
longer affected by the inhibitory TGF-beta made
by the tumor. We will also try to make CTL that
recognize additional structures (`antigens`) on
the lymphoma cells, so that we can increase the
proportion of lymphoma patients who might
benefit from these now more effective
CTL.
How
will your work one day help patients?
If successful, our CTL should be able
to kill tumor cells in patients with relapsed
Hodgkin lymphoma. The advantage of this approach
is that the T-cells are able to kill tumors and
not cause side effects. If successful, this and
other immunotherapies could also be used to
treat other types of blood cancers, including
multiple myeloma and leukemia.
Are you close to
clinical trials?
We have started to
enroll patients on our clinical trial using
T-cells that are resistant to TGF-beta for the
treatment of patients with relapsed Hodgkin
lymphoma.
What other projects
are you excited about and believe will benefit
patients?
We are already using T-cell
therapy for patients with Hodgkin lymphoma and
non-Hodgkin lymphoma caused by the Epstein Barr
virus, and seen >80% response rates, even in
patients who have not responded to previous
treatments. Ultimately, we would like to combine
T-cell immunotherapy with chemotherapy so that
we can optimize tumor killing by the T-cells and
also limit the long term side-effects of
chemotherapy (e.g. cardiac and pulmonary
toxicities and secondary malignancies).
What are
some of your hobbies and non-research interests?
I used to be an opera singer - now it
is a hobby. I also play tennis, golf and enjoy
running.
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LLS and Celator
Pharmaceuticals Announce Partnership to
Accelerate Development of Treatment for
AML
LLS's innovative partnership
initiative, the Therapy Acceleration
Program (TAP), continues to grow and help
create opportunities for new blood cancer
treatments. Founded in 2007, TAP supports
private sector and academic-based projects with
the goal of moving more blood cancer therapies
into the development pipeline.
LLS's
latest partnership is with Celator
Pharmaceuticals of Princeton, N.J. LLS is
supporting a Phase 2 clinical trial of Celator's
product for treating adults with AML. This
month, the first patient was enrolled at St.
Francis Hospital in Beech Grove, IND in
this trial designed to test the treatment
CPX-351 (Cytarabine:Daunorubinc Liposome
Injection). The treatment is being compared with
standard intensive salvage therapy in adult
patients up to 60 years old with AML in first
relapse.
"Celator has discovered a
novel way to deliver and enhance the activity of
agents that have been the standard of care in
AML for decades," said Louis DeGennaro, Ph.D.,
LLS's chief scientific officer. "There
have been many attempts to improve outcomes in
this patient population with little
success. The data collected on CPX-351 to
date, and the enthusiasm of clinical
investigators involved in that research, suggest
that Celator's approach holds real promise to
advance the treatment of AML."
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Blood Cancer Research
Program Sought  at
Department of Defense
Over the last several years, the U.S.
Department of Defense (DoD) has hosted an
increasing number of cancer research
projects through its Congressionally
Directed Medical Research Program (CDMRP), most notably for breast,
prostate and cervical cancers. The CDMRP
also previously held a chronic myelogenous
leukemia research program funded at nearly $30
million over a six year period. That program
ended in 2007.
Reps. Lois Capps (D-CA)
and John Shimkus (R-IL) have circulated a "Dear
Colleague" letter to the members of the U.S.
House of Representatives, asking them to sign on
to their letter in support of an appropriation
of $25 million for a new Blood Cancer Research
Program to be housed at the Department of
Defense (DoD). Dear Colleague letters are
common tools used by members of Congress to
solicit support for legislation or a funding
request.
But Reps. Capps and Shimkus only
have until Friday, April 3 to secure the support
of additional members of Congress. Most
members of Congress will not support these types
of Dear Colleague letter requests unless they
hear from their constituents.
For
this reason, we need your help in securing the
support of more members of Congress for this
vital new program. Please, visit The
Leukemia & Lymphoma Society's Legislative
Action Center to urge
your representative to sign in support of the
Capps-Shimkus letter today! Volunteers can
also call the U.S. Capitol switchboard at (202)
225-3121 and ask to speak to their
representative's office directly about the need
for this important research program.
Act
Now! - Urge
Your Representative to Support Blood Cancer
Research at Department of
Defense.
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eNEWSLINE is
published by The Leukemia & Lymphoma
Society®
Home Office • 1311 Mamaroneck Avenue
• White Plains, NY
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914.949.5213 • www.LLS.org
© 2009 The Leukemia
& Lymphoma Society
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| Participating member of An Alliance of
America's Premier Health Charities in the
Combined Federal Campaign, the National
Coalition for Cancer Research and Blood Cancer
Coalition. This publication is designed to
provide information in regard to the subject
matter covered, and is distributed as a public
service by The Leukemia & Lymphoma Society,
with the understanding that LLS is not engaged
in rendering medical or other professional
services.
The Leukemia &
Lymphoma Society is headquartered in White
Plains, NY, with 68 chapters in the United
States and Canada. Its mission: Cure leukemia,
lymphoma, Hodgkin's disease and myeloma, and
improve the quality of life of patients and
their families. Since its founding in 1949, LLS
has invested more than $550 million in research
specifically targeting blood cancers.
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