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Compassionate Abigail
February 17, 1980-June 9, 2001
Frank Burroughs, President
Board of Directors: Jullian Grante,
Jo Grante,
Doug Baxter,
Gene Krueger,
Anne Agnew,
Prince Agarwal |
Abigail Alliance for
Better Access to Developmental Drugs
To Help the other Abigails and Davids
A non-profit incorporated in Virginia
www.Abigail-Alliance.org
Abigail Alliance Objectives
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Develop incentives for pharmaceutical
companies to provide wider expanded access to cancer drugs
(compassionate use) |
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Help pharmaceutical companies develop
cancer drugs faster |
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Clarify any existing laws or
regulations that may slow development and approval of new drugs |
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Abigail Stories |
Early Abigail Alliance Stories |
Abigail Alliance Activities |
My Epiphany gift from Abigail
In 2001 my Epiphany gift from Abigail was a cat. Abigail was doing
everything possible to live out her life to the fullest, but Abigail knew
she was in big trouble since her cancer had returned in early January.
Abigail said I needed a "back-up pet" since my dog was
thirteen-years-old.
Abigail had Rags, her own kitten, but she wanted me to have a cat as
well. "I don’t know," I said. Never enthusiastic about change,
I was really hesitant to consider adding a cat to my household. Abigail
pressed hard, but I was evasive. Finally she said, "Dad, let’s just
go to the shelter and look." I agreed and we found an adorable little
steel gray kitten, about six months old. I was still hesitant, however,
and planned to think over the decision that night. Abigail understood and
called me at work the next morning to hear my decision. "You are
usually right," I told Abigail. "Let’s get the kitten
tonight."
"Fine, Dad, I’ll get all the stuff we’ll need today, and we’ll
go by the shelter when you get off work." When I saw all the stuff
– food, litter, box, transport, brush, etc. – I said, "What do I
owe you?" "Nothing," she replied. "I was too sick with
chemo to celebrate your birthday last fall, and Father’s Day will be
here before we know it, so let’s make the cat your now and again
present. The cat will be your reminder that I love you every time you see
her.
When we reached the shelter, we discovered that the gray kitten was
already spoken for, so we looked through the group to make another
selection. One cat of many colors named Baby approached us, and when we
spent time with her, she was very attentive and rubbed against us and
cuddled. This was one, sweet female cat. We chose Baby, and I realized
that with an older cat like her I wouldn’t have to worry about a kitten
climbing the drapes or drawing blood with her tiny claws.
We put the cat in the carrier and brought her home. And I’ve been
happy ever since. Baby was my last gift from Abigail before Abigail went
to heaven. Baby reminds me every day of Abigail’s loving spirit.¤
Abigail’s Continuing Story
Before Abigail Burroughs died of cancer on June 9,
2001, many people heard Abigail’s story on television and in newspapers
across the country. Abigail did not qualify for any trial of newly
discovered cancer drugs (because her cancer had started in the wrong
place) until she was too weak to participate. Abigail had devoted all of
her twenty-one years to helping others, and she planned to spend the rest
of her life as an advocate for cancer victims. Using her own experience as
an example, Abigail spent the last few months of her life appealing to the
pharmaceutical companies and the public at large for the wider use of
developmental drugs through clinical trials and compassionate use. Abigail
was successful! Abigail’s spirit is alive today in the caring community
in which she lived.
Abigail’s story is still being heard throughout the
United States. "We continue to get significant support on Capital
Hill, especially the House of Representatives, where Julian Grante, Doug
Baxter, and I were called to speak to a House committee in June,"
Abigail’s father reports.
"We are now setting up a non-profit group which we
are calling "The Abigail Coalition for Better Access to Developmental
Drugs." The Theta Delta Chi fraternity at the University of Virginia
– where Abigail was an A student until her death – has dedicated their
fall 2001 fund-raiser to help fund it.
"We are moving forward in getting media stories
about the need for wider use of newly developed cancer drugs." People
have contacted Abigail’s father, Frank Burroughs, from many places in
the country – some through the Network4Singles web site. For further
information on this issue, or for personal information regarding accessing
new drugs, contact him at frankburroughs@hotmail.com.
One of the people who contacted Frank was David Baxter’s
father. As a sixteen-year-old David was diagnosed with colorectal cancer
last spring. David was unable to participate in trials of new cancer
drugs. (Clinical trials usually are only available to people eighteen and
older.) After a shortened day at school Friday, October 5 – where he
conferred with a counselor about college, David had some friends over for
the evening. David died in his sleep on Saturday. David wrote the
following essay for his high school Fantasy Literature class on September
9, 2001. "David appreciated life, not just physical life, but the
purpose of life. David was learning from life right up to the very end.
His mission in life was complete and the Lord allowed him to come home
without having to go through more suffering." His heroic spirit lives
on.
David Baxter
September 29, 1984 - October 6, 2001
My Heroic Quest
by David Baxter
Everything was going great for me. I had just returned from a week away
from school to visit my brother and sister. I was also able to catch a
couple of spring training baseball games in Arizona. I somehow got a date
to the Junior Prom that I had suddenly decided to attend. Even better, my
date was one of the more gorgeous girls at the school. I was lucky enough
to participate in the spring musical "Dames at Sea." I really
couldn’t think of a better way to finish up the month. Unfortunately it
had already been decided.
Though the past two weeks had been incredibly great for me, I hadn’t
been myself. I felt sick the whole time I was in Arizona; I had pain in my
abdomen. By the time Junior Prom came around, I wasn’t feeling too great
as far as my body was concerned. I had a blast at the dance, but
afterwards I was feeling the late night.
The next week around Wednesday I felt I had to stay home. The next
morning I did the unthinkable. I told my mom to get me a doctor’s
appointment immediately. Now my mom knew that something was wrong, because
I never went to the doctor.
After finally getting to the doctor’s office, I had to endure the
usual questions from the nurse, "On a scale of one to ten how much
pain are you in; how’s your breathing?" Then she asks the question,
"How does it feel to go to the bathroom; does it hurt?"
Inside I’m thinking, "Are you kidding me; would I be here if it
didn’t hurt like nothing else I’ve ever felt." But on the outside
I hear myself say, "Oh, it’s not too bad; it is a little sore
though, I guess." With that she takes her notebook and walks out the
door.
Once again I’m waiting – but I’ll get used to that, because there
will be a lot of that ahead for me. The doctor comes in and gives me a run
down of the situation. After that he takes me to the radiology department
and performs a couple of tests I’d rather not mention, otherwise I may
lose yet another reader. After my "quick and painless" tests I
was allowed to go home.
Luckily for me I started to feel better later in the day, so I was able
to make it to work. Work was long and boring as usual, so I was relieved
when it was finally seven o’clock, time to go home. My dad picked me up
– which was kind of unusual because my mom generally was the one to pick
me up. I got in the car, and my dad turned down the music right away. That
was when I first knew that something was wrong. He got it out quick, just
flat out told me that the samples the doctor’s took were cancerous.
I was glad he told me that way. Everyone imagines what it would be like
to hear those words. Let me tell you, what you think that you’ll think
is no where close to what actually runs through your mind. I was okay
though; it hadn’t quite hit me yet.
So for the next couple of days nothing really seemed to happen in my
eyes even though my plan of attack was being laid out right in front of
me. I told my friends and met with doctors. My life was about change in a
very large way.
My friends that I had talked to every day just a few days earlier I
would see far less often, since I wouldn’t be able to go to school.
Before all this happened I liked to be outside: playing basketball,
fooling around – definitely not lying on the couch for days on end
watching the "Price is Right." If I didn’t have my family,
friends and church to help me through the obstacles that have been placed
in front of me, I don’t know what I would have done.
Quickly I began my radiation treatments along with my chemotherapy
treatments. For my chemotherapy my doctors decided to do a twenty-four
hour infusion instead of the normal once-a-week intravenous treatment.
This decision meant that I would have to have a catheter placed inside a
vein, and I would have to lug around a pack that contained a pump,
chemotherapy and an alarm. This plan was good and bad. On the one hand, I
wouldn’t have to go to the doctor once a week and sit there for two
hours. But on the other hand, I would have to carry around that bag.
The worse part at that time was that I was still committing myself to
do the play – so as not to let down my dancing partner. That meant that
I would have to find a way to hide that pack: go onstage, muster out some
kind of performance, sing, and somehow not fall down somewhere during this
process.
After the play I cut my connections to Woodland High School almost
entirely. Except for a few visits to see friends, I stopped going. I had a
personal tutor assigned to me by the school district. This plan was very
good, because soon I would be starting a new type of chemotherapy – my
going in once a week and getting terribly sick for a couple days.
That was when I started to do thousands of tests. I had blood work, C-T
scans, P-T scans, and scans using some other arrangement of letters. I had
doctor’s meetings to go to which seemed to be just about every other
day. I had to see my doctor in Woodland each day that I had an appointment
with another doctor, because I had to see him before I could go to see my
doctor in Sacramento. I’d go to see him, and he would ask the same
things my other doctor asked me. He’d give me some lab papers send me to
get some tests and after that send me to see some kind of specialist. The
last specialist I saw told me that I’d likely be spending a week in the
hospital for chemotherapy with a tube up my arm.
Shortly thereafter I made a visit to Sutter General Hospital in
Sacramento. You hear a lot of scary stories about cancer patients, and let
me tell you right now that they are true – every single one of them.
From the stories of nurses coming in at two in the morning to take your
vitals for some awful reason, to the noises from the room across the hall
– either screams or moans of who knows what. It was quite possibly the
worst four days of my life.
Thankfully it was only four days and not the entire week. Sadly enough
though, the reason I left early was that my liver had the equivalent of a
heart attack. So I was released from my bondage.
Along with the thousands of doctors’ cards I have
received, the sore stomach, and the incredible debilitating pain in my
back, I have realized things that perhaps some people never realize.
The greatest of these is how lucky I truly am. Even though I have a
disease that is quite persistent on destroying me (and is far as I am
concerned not doing very well at it), how else would I see all the small
things that I am fortunate to have in my life?
Whether it is something like taking a normal shower – which was
impossible while I had a catheter in my arm – to something as amazing as
knowing just how many people really care about me. Now that I am beginning
to win battles with the monster inside, I know how much this experience
has opened up my eyes – not only to what is around me but also to what
is inside of me.
A Daffodil Story
I keep splitting my daffodils and planting more as they get crowded. My rough estimate is that there are about 2,500 daffodil blooms
in my garden each spring. One of the places Abigail wanted her ashes spread was on my daffodil gardens.
I have a little daffodil story for you and your readers.
On Sunday my dear friends Pat and David from St. Michael's drove together to Abigail's Memorial service. They both could not come to the party, but on the way home, Pat wanted to stop by her old house on Buchanan Street across from mine. She stopped in front of her old house and mine and began to cry. She then told Dave a daffodil story. When Pat first moved into her house on Buchanan Street , she told Dave it was a difficult time in her new life as a single. Pat did not go into any detail about what had happened, but she was very lonely and going through the stress of moving at the same time.
The day after Pat moved in, eight-year-old Abigail, on her own, went down into my basement and came up with a big mason jar. Abigail then went out into the garden and picked a big bouquet of daffodils. Abigail took the flowers over to Pat. Pat was very touched. She told Dave that she has never forgotten and will never forget that wonderful sweet gift from Abigail. Pat said that Abigail thought of others. That Abigail's whole life was a special gift to many.
Frank, Abigail's Dad
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A sunflower forest is blooming somewhere
to celebrate life--past and future!
July 24, 2002
Meeting for FDA Clinicaltrials.gov
Capitol Hill Hyatt Regency Hotel
400 New Jersey Ave Washington, DC
Talk given by Frank Burroughs, President Abigail Alliance for Better
Access to Developmental Drugs
To help the other Abigails and Davids: frankburroughs@hotmail.com
office: 703-525-9266
I am Frank Burroughs, president of the Abigail Alliance for Better
Access to Developmental Drugs. My words this afternoon are dedicated to
sweet and beautiful thirty-five–year-old Alita Randazzo who died on
Saturday of colorectal cancer. Alita and her allies worked to try and get
developmental cancer drugs for her that had a significant chance of
extending or saving her life.
I am a father who lost his beautiful, compassionate, and very
intelligent only child to cancer. Abigail could not get developmental
caner drugs that had a significant chance of saving her life. Abigail was
only 21!
We are here today, because we all doing important work to save and
extend lives. I want to sincerely thank the Food and Drug Administration
and the National Library of Medicine for their ongoing efforts to help
cancer patients and others with life threatening illnesses.
The very important website, www.clinicaltrials.gov,
is one example of your good work. Like any of us who work outside of the
government, the government’s efforts are ongoing. We need to make sure
all clinical trials are listed on clinicaltrials.gov.
The clinicaltrials.gov web site must be kept up to date!
It is imperative that all company sponsored clinical trials get posted!
It is important that there is an ongoing effort to make
clinicaltrials.gov as user-friendly as possible.
Expanded access programs need to be listed.
Clinicaltrials.gov needs to be promoted so more cancer patients and
oncologists know about it. Only 25 to 37 percent of oncologists refer
patients to clinicaltrials.gov when they have exhausted approved
treatments!
Since you are interested in helping cancer patients, I want to briefly
talk about a few other issues the Abigail Alliance is addressing. Have you
seen the logo for the Abigail Alliance for Better Access to Developmental
Drugs? There were promising cancer drugs Abigail needed, but we could not
get that help to her. Abigail is a symbol of the other precious people who
are fighting for their lives.
Let me stress that there are ways to save more lives than are currently
being saved. If we have any bias or inclination to see things from our own
turf, we need to try very hard to see things from the perspective of our
most important clients. These clients are our fellow human beings who are
fighting for their lives as they try and survive cancer and other life
threatening illnesses. We all need to work together to develop the best
possible avenues to extend and save lives.
As President John F. Kennedy so well brought out in his book Profiles
in Courage, we need to go against the tide and do what is right. We
need to find creative ways to get developmental cancer drugs and other
drugs for life threatening illnesses to patients sooner.
We need to have the pharmaceutical industry committed to help in this
endeavor.
We need the Congress of the United States to help in any possible way
to facilitate saving and extending lives. Senators and representatives ran
so quickly to get in front of the cameras over corporate fraud. Come on!
Run in front of the cameras for cancer patients and others who have run
out of options in trying to save their lives!
The Abigail Alliance has worked hard to put together legislative ideas
that could help get developmental drugs for life threatening illnesses to
people sooner. We continue to get our well thought out detailed
legislative ideas to Capitol Hill.
We need the FDA to look at their own important organization and develop
ways to help get developmental life saving cancer drugs and other life
saving drugs to patients sooner!
We need the current administration to pay more attention to this issue
of life and death. Cancer is terror too!
The media has done some great work to get these issues out to the
public. However, we need more coverage!
I have talked to hundreds of cancer patients. Every one of these
special people are vigorously for more expanded access to new drugs! How
can anyone be against them!
Patrick Doran is a loving father and husband who is fighting for his
life and lives in Falls Church, Virginia. Here are his exact words:
"Cancer patients without other options are willing to assume many
risks if taking a particular drug may prolong their life.
We are fighters and we need to be given the tools to fight for our
lives. In exchange, we will provide data on our efforts, success and
failures, that may expedite the universal release of the drug to benefit
others. Please allow us to be pioneers. Allow us to take responsibility
for our fight by providing immediate access to potentially beneficial
drugs when all other options have failed. Frankly, EVERY ONE has much to
gain, and the patient has nothing to lose."
Last week Robert and Robin Krohn contacted me about their precious
five-year-old daughter, Morgan, who has exhausted approved cancer
treatments. Are we not going to help a five year old? There are solutions!
Saving lives is our first and most important goal! If your child,
spouse, sister, brother, father, mother, were facing what Patrick, Morgan,
and others are facing, what would you want!
My guess is that you would want action now!
Clinicaltrials.gov is part of this important effort. Let us redouble
our efforts to save lives, and let us do it now!
As Martin Luther King said, "I have a dream." All of us need
a dream to help the sick, whether rich or poor.
Please visit the Abigail Alliance web site: www.abigail-alliance.org.
Also click on www.CancerActionNow.org.
This will connect you the joint Abigail Alliance and Marti Nelson Cancer
Foundation web site CancerActionNow.org .
Thank you very much.
June 12, 2002
From: Frank Burroughs, President,
Abigail Alliance for Better Access to Developmental Drugs - to help the
other Abigails and Davids www.abigail-alliance.org
Dear special allies and supporters,
This has been another dramatic and difficult day in the ongoing Imclone
saga that we have been watching. Of course we have never been an
ally of
Imclone Systems, but we are advocates for cancer patients. I think
we saw the real possibility of it coming, but as you all most likely know,
Imclone's
former CEO, Dr. Samuel Waksal, was arrested today in New York City on SEC
violations.
The events of the past many months beg the question, has Imclone given a
higher priority to helping save cancer patients or making money?
Where is the Imclone expanded access program that they promised would be
filled with the FDA on Monday June 10? Is the latest Imclone crisis
another set back for an expanded access program of Erbitux (C225)?
Are there more revelations that may even bring the efficacy of their
promising drug into question?
Tomorrow there is a hearing on Capitol Hill into Imclone.
What about the cancer patients? Has the development of a promising
drug been handled improperly? Lives are at stake, and Martha Stewart
may have the perfect home and money from selling her Imclone stock early,
but what
about the cancer patients who do not have the energy to even clean their
houses; let alone decorate it or make fancy sherbet. Is money the
most important goal in life or could one dedicate their wealth and energy
to
helping others?
I think that, as much information as possible about Erbitux needs to be
made public, and if it shows efficacy, cancer patients should have some
chance to get into their expanded access program that Imclone promised.
As Abigail said in her 1998 high school salutatorian speech: "Success is
fleeting, but when all is said and done, all you have is your character."
Frank Burroughs
Abigail selling summer fruit in 1997
The Abigail Alliance for Better Access to Developmental Drugs is incorporated as a non-profit organization. To learn ways you can help
in efforts to increase the compassionate use of experimental
drugs, contact Abigail's Dad at frankburroughs@hotmail.com
or visiting the web site:
www.abigail-alliance.org
You can participate in the celebration of Abigail's life and the victories
of the Abigail Alliance through a coming book. Send us your thoughts and keep visiting this web site.
Thought you would like to read what
Frank wrote about our wonderful experience at UVA this weekend. It was a
time of closure. It was a beautiful and melancholy ending to a delightful
and challenging experience.
We had a lovely drive to and from Charlottesville, even
though it was raining Friday night and Saturday morning. The mountains and
abundant plants and animals were fascinating (saw some foals, calves and
llamas!). When Frank first went out on Sunday morning, four miniature
poodles made him the center of their morning games and brought him a time
of peace and joy. Four ducks (and a goose) strutted
importantly around the parking lot as we were trying to exit (and miss
them) that morning.
An exciting highlight was meeting the gracious
president of the university. The sermon Sunday morning was a gift from
God: Pentacost and Graduation are both times of change and renewal. A time
to look back at an eventful past and a time to look forward to an unknown
future full of hope. There is a copy on
this web site.
When Frank carefully tied an Abigail Alliance card with
the words "Love, Dad" on the beautiful butterfly balloon and
released it, most of the 2002 UVA graduating class gasped. The colorful
butterfly floated slowly upwards (and sideways), and then it went to rest
in the arms of a young, newly green tree. The cool morning breeze rocked
it gently in its perch, and we knew that Abigail's spirit was at peace in
the excitement on the UVA campus and reluctant to leave it quickly. I
believe that the butterfly balloon will delight several people from its
position in that tree -- and perhaps someone who knew Abigail will
discover and read the card.
What a delightful, inspirational ending to a special time.
The Preacher (in Ecclesiastes) was right when he said
that there is a time for everything under the sun.
How glad I am that God has brought each of you into my
life. I am fortunate indeed!
From: frankburroughs@hotmail.com
Date: Mon, 20 May 2002 Subject: UVA graduation
Dear special friends and family,
My weekend at the University of
Virginia was special, sweet, and melancholy. I was blessed with more
sweetness than melancholy.
UVA has been an important part
of Abigail's life and a special part of the lives of Abigail's family and
friends over these past four years, especially these past two and a half
years. Since there are so many wonderful UVA people and
organizations that have been so supportive, I do not want to list them all
for fear of leaving someone out.
I want to share a little of the weekend
with you.
UVA President Dr. John T. Casteen III and I
had a nice talk just before the very nicely done Valedictory Exercises on
Saturday that honored Abigail and others including a very special UVA
young man, Mark Edward Brzozowski, who died of cancer in 1999.
I was with one of Abigail's closest
friends, special Sara, part of the fabulous UVA foursome, at the reception
afterwards at President Casteen's house across from the UVA Rotunda.
I ran into Mark Brzozowski's long time
childhood and UVA friend Omar and Omar's family at the reception.
Omar, like Abigail, is a member of the
Jefferson Society. Omar delivered a wonderful remembrance talk at
UVA about his very close friend Mark some months ago. That evening
Omar also shared some words about Abigail. I talked with Omar's
brother, who attends James Madison University, and discovered he knows
Abigail's very special friend and Abigail Alliance board member, Anne
Agnew. I found out that Omar's mother and my sister Joyce are
friends and former co- workers.
I saw lovely Stephanie later on Saturday.
Another of the fabulous foursome.
My compassionate sister Joyce was with me,
and so was gracious Bonnie. Having Joyce there added so much to Saturday.
Joyce had the melancholy task of heading back to Northern Virginia alone
on Saturday with some of Abigail's furniture that Sara, Stephanie, and Jen
had in their UVA apartment.
I was apprehensive early Sunday morning as
I headed to the graduation exercises.
When I parked my car near Abigail's old
apartment and got out, I noticed for the first time, etched in the
concrete sidewalk poured in 1999; ABIGAIL.
I went to a beautiful 8 AM service across
from the Rotunda at St. Paul's Episcopal Church. The first Sunday of
Pentecost. The Disciples become Apostles and head out into the
world.
For me the scene on the UVA Lawn was over-
whelming. It was time for me to leave for home before the graduation
started. It was one of those moments that I had to do what was best
for me. As I was leaving with my translucent multi- colored helium
butterfly balloon, I had to find a place to launch the balloon on the
other side of the Rotunda from the lawn. I tried to go up the
Rotunda steps to the east deck. I had remembered this is where Abigail was
one week into her first year watching the big orange full moon against a
dark blue sky (UVA colors) with her new girl friends. I also wanted
the balloon to clear the trees. The security people would not let me
up there, because the procession was about to begin. I launched the
balloon on the lawn on the east side of the Rotunda hoping it would clear
the trees to the south as the cool wind blew from the north. The
balloon started to rise towards the sky, and then a gust wind sent it
right into a young poplar right next to the Rotunda. Wonderful
Bonnie, with a happy smile, said, part of Abigail's spirit just doesn't
want to leave UVA!
I then went to one of Abigail's special
places at UVA where she loved to spend time talking, studying, and
drinking earl grey tea. The Star Bucks across from the Rotunda.
I was ready to head back home early.
My only regret was that I had not seen Jen of the fabulous foursome.
I was waiting in line for the men's room upstairs in the quite part of
Star Bucks with some spunky UVA graduating men, when I could see someone
in a cap and gown coming towards me. It was Jen! With
tears in our eyes reflecting joy and melancholy feelings, we hugged.
The trip was complete except for the orange, of course, Gerber daisy I
bought at a fruit stand on the way home. Abigail's third most
favorite flower.
God bless you all for the love and support you have given Abigail,
her family, and her friends. You were with us in spirit this
weekend!
Frank
"Abigail said, ‘If I make it, I want to devote
the rest of my life to helping people with cancer.’ Somewhere along the
way, people who run AstraZeneca and ImClone must have taken that same vow.
How tragic if minutes before the dawn of a cancerless world, the sun sets
on a 21-year-old young woman because of drug companies’ refusal to
deviate from policy as pitiless as the disease itself."
Jullian Grante, lecturer, motivational speaker,
political advocate, and member of the Board of Directors for the Abigail
Alliance for Better Access to Experimental Drugs. Contact him at Jgrante2@yahoo.com
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from Frank
Burroughs, president
Abigail Alliance for Better
Access to Developmental Drugs
To Help the other Abigails and
Davids
A non-profit incorporated in Virginia with 501(C3) filed
with the IRS
and go to the joint Abigail Alliance and Marti Nelson Cancer Foundation web site:
www.CancerActionNow.org
This update is dedicated to compassionate and beautiful Alita Randazzo
who lost her battle with colorectal cancer after trying in vain to get
developmental drugs that had a chance of saving or extending her life.
Please keep Alita’s father Peter Randazzo and Alita’s fiancé Ernie
Marine and their families in your prayers. Among many things Alita did,
despite her cancer, she helped her dad run Randazzo Tavern in Vineland,
New Jersey. Alita and her wonderful family have been and continue to be
wonderful supporters of the Abigail Alliance.
- Fall Fundraiser: Mark your calendars for
November fundraiser. Details will be announced, but we sometimes have
a
gala, black tie optional, Abigail Alliance Dinner Dance with
Auction.
We
may
- Major FDA meeting: Director Cynthia Small, along with board member
and our chief lobbyist Jullian Grante, joined me at a large FDA
meeting for Clinicaltrials.gov on July 24 at the Capitol Hill Hyatt
Regency Hotel in downtown Washington. I spoke at the meeting stressing
the need to get more pharmaceutical companies to get their clinical
trials posted on clinicaltrials.gov and the need for more attention
from Congress, the White House, the FDA, and the press on the issues
the Abigail Alliance is putting forth to help those is dire need. My
speech appears below.
- Expanded Access: The Abigail Alliance and our close allies the Marti
Nelson Cancer Foundation continue to work with pharmaceutical
companies to do expanded access programs and to increase the size of
existing expanded access programs. This effort can be very
frustrating!
- Press: We are working with three major newspapers on possible
stories and working on other media contacts. Fred Santino, Abigail
Alliance New England Coordinator, is also working on media coverage.
Fred got a great editorial published recently in the Atlanta Journal.
- UVA: University of Virginia fraternity Theta Delta Chi and UVA
sorority Pi Beta Phi are working on the second annual Abigail Alliance
Casino Night fundraising event in late October. There are two other
organizations at UVA that are showing interest in helping the Abigail
Alliance. Go Cavaliers!
- New Link: We have added a new link to our web site,
www.abigail-alliance.org,
Corporate Angel Network, www.corporateangelnetwork.org.
Corporate Angel Network arranges free travel for cancer patients on
unused seats on corporate planes. This is wonderful work they are doing!
This new link shows our support of this effort. A future goal of the
Abigail Alliance is to help poor people get better access to treatments.
- Linda Springfield: Linda Springfield has joined the wonderful
volunteer Abigail Alliance staff initially helping us find a PR firm
pro-bono and will be helping Cynthia Small with the fall fundraiser.
- FDA: Hard working Steve Walker continues to help us address
important FDA issues that will help people, like his lovely wife
Jennifer, who have run out of approved options in their battle with
cancer and other life threatening illnesses.
- Growing: The Abigail Alliance keeps growing very rapidly. We
continue to get more national recognition, people keep joining our
important effort, and much needed financial help is growing. As I
often told Abigail, you all are the best!
The second Abigail Kathleen Burroughs Award
for Outstanding Community Service was awarded to two students at George
Mason High School
in Falls church, VA in May 2003.
Compassionate Abigail did much during her short life to help others, so
these annual awards have been established by all her loving parents in her
honor.
2002 Update
Abigail Alliance for Better
Access to Developmental Drugs
To Help the other Abigails and
Davids
from Frank
Burroughs, president
frankburroughs@hotmail.com
First of all, as I continue to say, thank you all for your continued
support and interest in the Abigail Alliance for Better Access to
Developmental Drugs - to help the other Abigails and Davids
FEEL FREE TO SHARE THIS MESSAGE WITH OTHERS
1. The Abigail Alliance web site www.abigail-alliance.org
has added a new fifth page, Links/Updates. There is a very nice picture of
someone special each month, and look for future pictures of the month on
the Links/Updates page.
2. The first annual Gala Dinner Dance fundraiser is coming on November
2, 2002.
Abigail Alliance fundraising director, Cynthia Small, is already working
on the project. We are looking for items or services for an auction that
evening. Artists Kayti Welsh, Peter Gutterman, and Amy Brouse Haseltine
have already offered art works for the auction.
3. FDA user fee increases: The increase in fees will be used to help
speed up review and approval of new drugs and increase safety overview.
Although there was concern about pharmaceutical company influence at the
FDA, the Abigail Alliance supported the increase in user fees for
companies applying for testing and approval of new drugs. In two high
level FDA meetings in March and April the Abigail Alliance voiced concern
that the fee increase would hurt small pharmaceutical companies. We were
informed and reassured by the FDA, that small companies that cannot afford
the fees are granted waivers. We feel this is a win, win situation for
patients, and for large and small pharmaceutical companies. Win, win
results continues to be our goal.
4. The joint Abigail Alliance and Marti Nelson Cancer Foundation web
site www.CancerActionNow.org
web site has been launched. You can access it directly by its http or by
going to our web site www.abigail-alliance.org
and clicking on the light blue Cancer Action Now button.
5. The www.abigail-alliance.org
web site is now linked with NORD's (National Organization of Rare
Disorders) web site and the Sarcoma Foundation of America (SMA) web site.
6. Mark Thornton, MD, Phd is the president and chairman of SMA and is
the Abigail Alliance Rare Cancers Advisor. Mark represented the Abigail
Alliance at the ASCO (American Society of Clinical Oncologists) during
their major conference in Orlando, FL.
7. We continue to meet with and keep in contact with our allies and
other legislators on Capital Hill. We are working on setting up an
important meeting with high level staff members at Senator Kennedy's
office.
8. The Abigail Alliance and our allies will continue to address the
issue of providing more information about drugs to patients in clinical
trials, expanded access, and compassionate use programs at a FDA meeting
on June 5. Cynthia Small will be representing the Abigail Alliance at the
meeting.
9. Vivianna Cordova and Jonathan Tonkowich of George Mason High School
in Falls Church, Virginia will be awarded the 2002 Abigail Kathleen
Burroughs Award for Outstanding Community Service. Abigail's mom, Kathleen
Dunn, stepfather, Gene Krueger and I will be contributing our own
resources for these two awards. Compassionate Abigail did much during her
short life to help others.
10. Abigail was honored at the University of Virginia Valedictory
Exercises on May 18 in Charlottesville, VA. She was a 4.0 student there
until she left this earth on June 9, 2001.
11. Abigail Alliance FDA Advisor, Steve Walker, continues to work hard
and intelligently on FDA issues, and has put together a very good document
on changes that need to be made at the FDA.
12. We continue to work on media stories and have a Boston Globe
article in the works among others.
The Abigail Alliance for Better Access to Developmental Drugs is
dedicated to encourage wider use of experimental drugs for people with
life-threatening diseases. Incorporated as a non-profit organization, the
Abigail Alliance has many fund-raising events planned for the coming
months, including an Art Auction and Dance on November 1, 2003 and special
notice at the Washington Caps games this season.
To learn ways you can help
in efforts to increase the compassionate use of experimental
drugs, visit their web site: www.abigail-alliance.org
or contact Abigail's Dad at frankburroughs@abigail-alliance.org.
You can participate in the celebration of Abigail's life and the victories
of the Abigail Alliance through a coming book. Send us your thoughts and keep visiting this web site.
This update is dedicated to compassionate and beautiful Alita Randazzo
who lost her battle with colorectal cancer after trying in vain to get
developmental drugs that had a chance of saving or extending her life.
Please keep Alita’s father Peter Randazzo and Alita’s fiancé Ernie
Marine and their families in your prayers. Among many things Alita did,
despite her cancer, she helped her dad run Randazzo Tavern in Vineland,
New Jersey. Alita and her wonderful family have been and continue to be
wonderful supporters of the Abigail Alliance.
- Washington Capitals Hockey Team: The Caps have joined the Abigail
Alliance as a major supporter. We want to thank Tim Bronaugh and all
the Caps for their concern and interest in our work to help others.
Along with other help there will be an Abigail Alliance Caps game
night.
- Fall Fundraiser: Mark your calendar for Saturday November 1 for the
gala, black tie optional, Abigail Alliance Dinner Dance with
Auction. We have a ballroom (pro-bono!) at a very nice country
club. Abigail Fundraising Director, Cynthia Small and Linda
Springfield will be putting together a fun evening to be remembered!
We need items and services for the auction. WE NEED VOLUNTEERS TO HELP
PLAN THIS FUNDRAISER AND TO HELP THE NIGHT OF THE EVENT.
- Major FDA meeting: Director Cynthia Small, along with board member
and our chief lobbyist Jullian Grante, joined me at a large FDA
meeting for Clinicaltrials.gov. I spoke at the meeting stressing
the need to get more pharmaceutical companies to get their clinical
trials posted on clinicaltrials.gov and the need for more attention
from Congress, the White House, the FDA, and the press on the issues
the Abigail Alliance is putting forth to help those is dire need. My
speech appears below.
- Expanded Access: The Abigail Alliance and our close allies the Marti
Nelson Cancer Foundation continue to work with pharmaceutical
companies to do expanded access programs and to increase the size of
existing expanded access programs. T
- Press: We are working with three major newspapers on possible
stories and working on other media contacts. Fred Santino, Abigail
Alliance New England Coordinator, is also working on media coverage.
Fred got a great editorial published recently in the Atlanta Journal.
- UVA: University of Virginia fraternity Theta Delta Chi and UVA
sorority Pi Beta Phi are working on the second annual Abigail Alliance
Casino Night fundraising event in late October. There are two other
organizations at UVA that are showing interest in helping the Abigail
Alliance. Go Cavaliers!
- New Link: We have added a new link to our web site,
www.abigail-alliance.org,
Corporate Angel Network, www.corporateangelnetwork.org.
Corporate Angel Network arranges free travel for cancer patients on
unused seats on corporate planes. This is wonderful work they are doing!
This new link shows our support of this effort. A future goal of the
Abigail Alliance is to help poor people get better access to treatments.
Linda Springfield: Linda Springfield has joined the wonderful
volunteer Abigail Alliance staff initially helping us find a PR firm
pro-bono and will be helping Cynthia Small with the fall fundraiser.
FDA: Hard working Steve Walker continues to help us address
important FDA issues that will help people, like his lovely wife
Jennifer, who have run out of approved options in their battle with
cancer and other life threatening illnesses.
Growing: The Abigail Alliance keeps growing very rapidly. We
continue to get more national recognition, people keep joining our
important effort, and much needed financial help is growing. As I
often told Abigail, you all are the best!
Background
ABIGAIL’S STORY
presented May 31, 2001 to the Bio-Medical
Conference in Reston, VA
sponsored by the Northern Virginia Technology Council (NVTC)
My name is Frank Burroughs, but for the
past twenty-one years, I have been better known as Abigail’s Dad. I want
to thank you for the opportunity to tell Abigail’s story and her
frightening life and death battle with cancer. Also I want to talk about a
growing issue. That issue is the need for wider compassionate use of
experimental drugs.
Compassionate is a word that describes
Abigail. For the first nineteen years of her life, Abigail was an active
little girl, a very good soccer player in her teens, a brilliant student,
and a deeply caring girl.
For the past year and a half, since Abigail
was just nineteen, Abigail has been struggling with sqamous cell
carcinoma. She has had various chemotherapy treatments and radiation. Two
and a half months ago we ran out of conventional treatments. However,
because her cancer cells show a high EGFR expression, new experimental
EGFR targeted agents show a significant promise of helping Abigail. Sadly,
for months we have been unable to get Abigail into narrowly defined trials
or to get compassionate use of EGRF targeted drugs, which are Iressa,
produced by Astra Zeneca and C225, produced by Imclone Systems.
Abigail’s oncologist at John’s Hopkins
has determined that Iressa is the better drug to treat Abigail’s cancer.
Only recently have we learned from the drug companies of trials that
Abigail may qualify for. We needed Iressa or C225 sooner. Abigail’s
cancer has spread as we waited to get help. I am sure you can imagine how
frightening this ordeal is for Abigail, for her mother Kathleen, for her
step dad Gene, for me, and for others who love her so much.
Abigail is just as precious as other
children. This story is her story and also the story of others younger and
older than her. She was a happy child and teenager. The beginning of her
adult life has been hard.
Abigail has helped countless people.
Abigail is compassionate. Abigail has worked in homeless shelters, and
started a tutoring program for children who were not doing well in school.
She helped me on church projects to collect new toys and clothing for poor
children. Abigail worked on other projects like making a summer trip to
Syracuse, New York to help run a free summer camp for poor children and to
fix up homes of poor people. This is the short list.
Abigail was the 1997 recipient for the
eighth Virginia congressional district of the Harry F. Byrd, Jr. Award for
leadership and community service. Abigail won scholarships and awards from
the Lions Club, The Civitan Club, and Bailey Family Foundation for her
community service. She was the salutatorian of her 1998 graduating class
at George Mason High School in Falls Church City, Virginia.
Abigail entered the University of Virginia
as an Echols honor student in the fall of 1998. At the University of
Virginia Abigail is known for the help she gives others and for her
outstanding academic achievements. Abigail is known for her compassion.
And then, tragedy struck Abigail and her
family in December 1999. There has been hope but we have struggled for two
and a half months to reach it. Astra Zeneca and Imclone Systems have the
hope, and just in the last couple of days we have been notified of trials
we may be able to get into, but are still waiting to hear if Abigail
qualifies for the trials.
If there had been wider availability of the
drugs that show a significant chance of helping her, we could have been
treating her sooner. Some pharmaceutical companies actually have wide
compassionate use programs. Maybe you have seen some of their ads on TV.
They get the satisfaction of helping others, and they get excellent public
relations out of their concern, efforts, and investment.
This wealthy country can afford a 1.35
trillion dollar tax cut, but the needs of people suffering is not getting
the attention that is needed. I am convinced that there are financial
resources in industry and government to fund the wider compassionate use
of experimental drugs.
The issue of compassionate use of promising
drugs is not a quiet issue. In recent weeks more and more attention has
been paid to this issue on Capital Hill. On Friday, May 25, 2001, there
was a Senate hearing on the issue of wider compassionate use of hopeful
experimental drugs. A wonderful lobbyist, Julian Grant, who is working for
us pro bono, talked about Abigail with Senator Orrin Hatch, after the
hearing that Friday. Writer Steve Ginsberg dramatically told Abigail’s
story in the May 7 edition of the Washington Post. Dale Sully, of ABC
affiliate WJLA here in Washington, did a passionate story about Abigail
for WJLA’s 6:00 o’clock evening news on Memorial Day.
From their stories and others, Abigail’s
story continues to spread. We hope to help Abigail, and we hope others
will be helped by our efforts in the future. The Washington Post Abigail
story is available on-line at www.washingtonpost.com.
I particularly want to thank a wonderful
woman who has helped Abigail and her family, Bobbie Kilberg. And I want to
thank everyone listening for the opportunity to tell Abigail’s story.
Because Abigail’s story is ALSO the story of others.
An important word in Abigail’s story is
the word compassionate. The cornerstone of Abigail’s life has been
compassion. When others were in need, Abigail was there.
For more information
visit our website: www.abigail-alliance.org
and go to the joint Abigail Alliance and
Marti Nelson Cancer Foundation web site: www.CancerActionNow.org
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Final Farewell to Abigail Burroughs
By Michael Hoover
Amid her favorite yellow roses and sunflowers, the
family and friends of Abigail Burroughs said a final farewell to her at a
memorial service last Sunday at St. Mary’s Episcopal Church in
Arlington.
Abigail’s stepfather, Gene Krueger, called her "a
true champion, one who participates in the struggle with dignity."
Abigail, a graduate of George Mason High School and a
third-year student at the University of Virginia, died June 9 after a
valiant struggle against cancer.
Scores of Abigail’s family members and friends later
attended a party in her memory at the newly renovated Falls Church
Community Center. Among refreshments, many donated by attendees, Abby’s
friends recalled her generous nature and quiet strength. One room in the
center was set aside for people to browse through photo scrapbooks that
celebrated Abby’s life and participants wrote down memories and
messages. Before her death, Abigail had requested a party to celebrate her
life, not mourn her death.
Abigail’s courageous battle to obtain experimental
drugs galvanized supporters throughout the state, especially in Falls
Church and in Charlottesville. Thousands joined "Abby’s Army"
in writing letters and petitioning pharmaceutical companies to make drugs
available on a "compassionate use" basis. The petitioners ranged
from elementary school children to U. S. Congressmen and Senators.
Ironically, one company finally granted Abigail
admission to a promising clinical trial in Texas, contingent upon her
regaining enough strength to participate. Sadly, Abigail died just days
before she would have entered the trial.
Before her death, Abigail urged her family to continue
the fight to encourage drug companies to grant the use of experimental
drugs to terminally ill patients. Her father, Frank Burroughs, along with
other family members and friends are carrying on Abby’s fight, meeting
with members of Congress to support this cause.
Memorial gifts in the name of Abigail Burroughs may be
made to the American Institute
for Cancer Research.
From the July 26, 2001 edition of Falls Church
News-Press, Falls Church, VA On-line at www.fcnp.com
Abigail Burroughs—‘My Braveheart,’ Says Dad
—Dies After Heroic Fight
By Michael Hoover
Falls Church News-Press
Falls Church, VA
Thursday, June 14, 2001
Her spirit was willing, but her body was just too weak.
Just days after she heard the heartening news that if
she could get her strength up, she could participate in a promising
clinical trial in San Antonio, 21-year-old Abigail Burroughs, a 1998
graduate of George Mason High School, lost her long battle with cancer and
died peacefully in her sleep Saturday afternoon.
"She died with incredible dignity, courage and
grace," said her father Frank Burroughs. "She never gave up
hope."
Neither did Abby’s legion of supporters who spent the
past many months writing letters urging pharmaceutical companies to grant
her the use of experimental drugs on a compassionate use basis.
Over 6,000 letter writers and petitioners—from
congressmen and senators to the Falls Church City Council and School Board
to students at her old high school to University of Virginia students—had
joined Abby’s Army. Abigail was a third-year student at U Va.
One company, OSI Pharmaceuticals in Uniondale, N.Y., did
answer the many pleas and Abby was scheduled to begin the clinical trial
in two weeks contingent upon regaining enough strength to participate.
Toward that end, she agreed to a feeding tube to receive
nutrients and her father said, "We could see a noticeable improvement
Wednesday, Thursday and Friday both physically and in her determination.
Her spirit never quit fighting, but her body just couldn’t make
it."
Throughout her long ordeal, Abigail, who her father took
to calling "Braveheart," told her family that she never wanted
any "negative energy" to color her situation. While frustrated
over the drug companies’ reluctance to grant her the drugs, she chose to
simply encourage her family and friends to lobby for a practice of wider
compassionate use for terminally ill patients. She told her family that
she wanted to devote her life to helping victims with cancer.
Last Sunday at George Mason High School where Abigail
was the salutatorian three short years ago, the Class of 2001, which had
adopted Abby’s cause, honored her during their baccalaureate by lighting
a candle in her memory and observing a long moment of silence. Senior Mary
Prendergast dedicated a song to Abigail.
Friends and family gathered June 12, 2001 at Murphy’s
Funeral Home in Falls Church to pay their respects. In accord with Abigail’s
wishes, there will be no funeral. A memorial service to celebrate Abigail’s
life will be held on July 22 at St. Mary’s Episcopal Church at the
corner of Glebe Road and Old Dominion Drive in Arlington. Eventually, her
ashes will be spread at her favorite place, Chincoteague.
Abigail’s family has designated the American
Institute for Cancer Research for memorial contributions in her name.
|
A Gift from God
Abigail Kathleen Burroughs
February 17, 1980 - June 9, 2001
Heroes on the Field
by Mary Carol Lewis
The battle for Abigail's body on earth has been lost,
but battlefield has revealed many heroes. A quotation that has guided my
life is an anonymous reference from a book on Texas battlefields. It goes
like this:
"You cannot choose the
battlefields,
The gods do that for you,
But you can set a standard
Where a standard never flew."
Abigail and many of her friends and relatives have
revealed God's love radiating from their hearts and set standards
"where standards never flew." For example, OSI Pharmaceutical
was very moved and offered to start their trial of a new drug early so as
to include Abigail. We were preparing to take Abigail to San Antonio the
following week in hopes of using that drug and sparing her life. God will
bless that company for the kindness they showed one of his little lambs.
As it happens, San Antonio was originally surrounded on
three sides by the Brazos ("arms of God") river. So we were
planning to send her into the "arms of God." God has chosen
another way to hold her in his arms in complete peace without future pain.
God alone knows our needs, and He has provided for Abigail and will
provide for each of us as well.
Abigail said that she wanted to devote her life to those
fighting cancer. Her spirit lives on in those of us who bring that dream
to fruition.
Thank you for your prayers. Blessings surround Abigail's
family and friends, so we know they are being answered. Everyone is
holding up well despite the many difficult experiences and decisions.
Abigail has chosen not to have a funeral, but instead
have a memorial service on July 22 at 2:30pm at St. Mary’s Episcopal
church in Arlington, VA after her friends return from distant travel.
Check her high school’s web site for more information:
www.fccps.k12.va.us/gm
We will miss Abigail, and the whole world has a loss
because of the shortened life on earth of Abigail Burroughs, but she is at
peace and living in beauty and joy.
Abigail makes a wonderful "Mascot" for all the
people who are suffering within sight of help, not only in America, but
Africa and other areas as well. People can understand rallying behind a
beautiful, caring young woman. So they listen to her story and hopefully
become more aware of possibilities.
We are not able to see all the results of an event in
history, but I believe that "all things work together for good."
We cannot see all that has been or will be accomplished by means of that
event. Just because we experience a loss does not mean that much has not
been won. Look at D-Day. Hundreds of lives lost, but thousands of lives
saved. Life is a risk.
The reason I included the life of "the little Israelite maid"
from II Kings in my story about Abigail's plight is that I cannot imagine
anything worse than having your bright, lovely young daughter carried away
by marauding godless soldiers into a foreign country to become a slave.
But God used that event in history to save a man's life
and turn many of the people in that strange land to the wisdom and grace
that comes from awareness of his love and guidance. We will miss Abigail
dreadfully. But I believe that the story will have a happy ending – just
not the one we hoped for. Let us pray and work toward the health of those
who have similar needs but are not as powerful, beautiful or capable as
Abigail. Thank you for your gracious, caring work in her behalf. Please
express our love and thanks to everyone. Their prayers have been a
wonderful strength and asset to all of us during this difficult time.
Think of something that is causing you
pain or worry or anxiety. When you do not identify with that thing or
situation, you do not feel threatened: You can be at peace. You can be
very active, but you will not feel threatened. Whenever you experience
negative feelings, look for the desire behind that suffering. There is
something you desire very keenly or you would not be suffering. Identify
the desire. Also, you will find that you do not simply desire something
(or some outcome), but you have in some way identified your happiness with
that thing or outcome. You have said to yourself, "My well-being –
almost my existence – is dependent upon this desire." All suffering
is caused by identifying yourself with something.
Recognize it and release it, and you will be happy.
Anthony de Mello in Awareness: the Peril (Doubleday)
We look into the dark sky
And see thousands
of mysterious points of light.
Some call this miracle "stars"
And equate them to burning suns.
But some say they are openings
in the heavens
Where the vibrant radiance
of those we have lost
Shines through in love
To let those precious ones
still bound to earth
Partake of the joys of peace
that they are sharing ~
Living in the presence of a loving God ~
With those who stepped up there
before them.
– based on an Eskimo legend
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