HONORING

CONGRESSWOMAN LOUISE SLAUGHTER

4TH ANNUALFIGHT C. DIFF

GALA

OCTOBER 18, 2013

MISSION

The Peggy Lillis Memorial Foundation works to increase prevention of and

minimize death and disability resulting from clostridium difficile infection and

associated diseases by educating physicians, patients, and the public at large,

and by advocating for proven solutions within health care and public health

systems.

NATIONAL ADVISORY COUNCIL

Christian John Lillis

Co-founder & Executive Director

Victoria Amari

Helen Beigel, RN

Denice Hilty, DC

Tammy Kohlschmidt

Julie Reagan, PhD, JD, MPH

Moshe Rubin, MD

Erik Satre

Alicia Skovera, MSW

Cynthia Wagner, RDH

Reid Winick, DDS

Chirstopher Young

Liam James Lillis

Co-founder

CONTACT US

266 12th Street, #6 Brooklyn, NY 11215

t: 917.364.4658 e: cjlillis@peggyfoundation.org

w: www.peggyfoundation.org

PROGRAM

COCKTAIL RECEPTION

WELCOME AND INTRODUCTION Christian John Lillis & Liam Lillis, PLMF

ONE PATIENT’S PERSPECTIVE ON LIVING WITH C. DIFF

Catherine Duff, Fecal Transplant Foundation

PLMF AWARD PRESENTATIONPRESENTED BY DR. MARTIN BLASER,

NYU LANGONE MEDICAL CENTERto Congresswoman Louise Slaughter

UNVEILING THE PEGGY LILLIS MEMORIAL FOUNDATION’S 3-YEAR STRATEGIC PLANChristian John Lillis, PLMF

WELCOME LETTER

Welcome the 4th Annual FIGHT C. DIFF GALA. Tonight is a celebration of the

progress we’ve made in our fight against clostridium difficile (C. diff) infections,

Congresswoman Louise Slaughter’s remarkable record of public service, and

the unveiling of our new 3-year strategic plan.

Later this month would have been Peggy’s 60th birthday. Though few people

enjoy getting older, she embraced each new decade and deemed it was better

than the last. She was a believer in the maturity that age and experience bring.

Becoming a single mother at 24 meant that Peggy had to grow up fast. This

wasn’t always easy but her many sacrifices helped us to become the men we

are today.

Much like Peggy, the foundation is getting better with age. In four years, we

have grown from being a small organization comprised mostly of Peggy’s family

and friends to a significant player in the battle against C. diff. Our first gala was

sponsored primarily by friends, local businesses and Peggy’s union, the United

Federation of Teachers (UFT). This year we have seven corporate sponsors,

including Cubist Pharmaceuticals, Meridian Bioscience and Sanofi Pasteur.

Similarly, this year UFT is joined by the American Postal Workers Union, the

United Steelworkers and Rochester & Vicinity Central Labor Council. And we

continue to be supported by friends old and new.

More important than their generous financial support is that the growth

and diversity in our sponsors reflects the growing movement to fight C. diff.

This emerging awareness of C. diff as a threat to public health is visible in:

• Increased depth and breadth of reporting on C. diff, including national

news stories from Reuters and the Associated Press to local papers like the

Stockton Daily Record,

• The growing number of hospitals fusing their janitorial services and infection

control departments, leading to impressive declines in C. diff transmission,

• The increasing number of C. diff sufferers using social media to connect, share

stories and advocate for themselves and others on Facebook and Twitter,

• The number of companies engaged in everything from developing C. diff

vaccines to more sensitive and accurate testing to better cleaning products,

• The growing awareness that antibiotic overuse (a chief driver of the C. diff

epidemic), both in agriculture and medicine, is not only lessening their

effectiveness but also spurring treatment resistant strains, and

• New organizations like The Fecal Transplant Foundation are rising up to

spread awareness of C. diff and new treatments.

At the same time, our understanding of the C. diff epidemic’s nature is shifting

A recent genetic analysis of C. diff infections at the four Oxford University

Hospitals during a three-year period found that in only 35 percent of cases the

bacteria passed from one person to another in the hospital. In other words, nearly

two-thirds of all C. diff cases are originating outside of hospitals. This finding

and others including the doubling of C. diff

rates from 2000 – 2010, increased C. diff

risk due to antacids use, and the infection’s

spread into previously low-risk popula-

tions, including pregnant and postpartum

women, and otherwise healthy children,

demonstrate the need for broad-based

public education.

Part of maturing has been developing

our first strategic plan that we’re unveil-

ing tonight. This plan is the result of 9

months of work on the part of a core team

of PLMF volunteers and consultants from

National Executive Service Corps (NESC). NESC did extensive research into

the C. diff epidemic, the landscape of organizations, government agencies

and companies in the fight against it, and gathered the wisdom of a cadre of

experts in medicine, public health, healthcare policy, and patient safety as well

as several former C. diff sufferers. This plan is the basis of our strategy and

growth over the next three years as we broaden our educational reach, focus

our advocacy efforts, and grow to a scale that enables us to truly move the

needle on this epidemic.

Finally, we are thrilled to present our Lifetime Achievement Award to

Congresswoman Louise Slaughter. Congresswoman Slaughter is a true pioneer

and as the sole microbiologist in Congress an incredible advocate for medical

science, research, and public health. Her distinguished career in the House

of Representatives includes an impressive legislative record of expanding

health research and care for women, preventing insurance companies from

discriminating against people based on genetic information, introducing the

Preservation of Antibiotics for Medical Treatment of 2013 (PAMTA), designed to

significantly reduce the quantity of antibiotics routinely used in food production,

and serving as one of the lead authors of the Affordable Care Act.

We continue to provide critical information and support to C. diff sufferers

and their families across the country. Our maturation process is embodied in our

new plan, our engagement of elected officials like Congresswoman Slaughter

and our growing network of doctors, public health experts, corporate partners,

patient safety activists and thought leaders in healthcare. Together, we will

accelerate the movement to truly fight C. diff and amplify our impact so that

more people know the risk factors, symptoms, available treatments, and, most

important, how to prevent this dangerous infection.

Thank you for joining us for a night of celebration and to recommit ourselves

to the fight against C. diff in memory of our mother and on behalf of all those

whose lives may be saved.

With love and gratitude,

Christian John Lillis Liam LillisCo-chair Co-chair

Peggy with her sons Christian (left) and Liam.

HONOREE:

CONGRESSWOMAN LOUISE SLAUGHTER

Elected in 1986 to represent the people of

Monroe County New York in the U.S. House

of Representatives, Congresswoman Louise

M. Slaughter (D-NY-25) is the Ranking

Member of the Committee on Rules. From

2007–2011, Congresswoman Slaughter served

as Chairwoman of the Committee on Rules,

making her the first woman in history to serve

in that role. A member of the House Democratic

Leadership, she also serves on the Democratic Steering & Policy Committee.

As the only Member of Congress with a degree in microbiology, Louise has

played a central role in the major health and science issues of our time. She had

a lead role in crafting and passing the Affordable Care Act, and brought the

legislation to the House Floor for final passage.

She is the original author of the Genetic Information and Non-Discrimination

Act (GINA), which is now Public Law No. 110-223. Called the “first civil rights

legislation of the 21st Century” by Senator Ted Kennedy, GINA prevents health

insurance companies from revoking an individual’s insurance or employers from

terminating an employee based on genetic information.

She also authored the Preservation of Antibiotics for Medical Treatment

Act, which would end routine use of antibiotics on healthy animals, curbing the

growing threat of superbugs. In 2011, Louise confirmed with the FDA that 80%

of antibiotics used in the U.S. are used on animals. This habitual use has been

linked to the growing threat of antimicrobial-resistant infections in humans.

PAMTA would phase out the use of 8 important classes of antibiotics on healthy

animals while allowing for their use to treat sick animals.

Louise also champions women’s healthcare issues & equal rights. As a mem-

ber of the House Budget Committee in the early 1990s, she secured the first

$500 million earmarked by Congress for breast cancer research at the National

Institutes of Health (NIH).

She also successfully fought to pass legislation guaranteeing women &

minorities are included in all federal health trials, and established an Office of

Research on Women’s Health (ORWH) at NIH. Ten years after the creation of

ORWH, the NIH awarded Louise the “Visionary for Women’s Health Research”

award.

Congresswoman Slaughter holds a Bachelor of Science in Microbiology and

a Master of Science in Public Health from the University of Kentucky. Prior to

entering Congress, she served in the New York State Assembly (1982-86) and

Monroe County Legislature (1976-79).

A native of Harlan County, Kentucky, Congresswoman Slaughter has lived

most of her life in Rochester, New York’s suburb of Fairport. She is married

to Robert Slaughter and together they have three daughters and seven

grandchildren.

DAVID L’HEUREUX

FACES OF C. DIFF

JUDY DEXTER

MEGAN F.

FACES OF C. DIFF

David L’Heureux was a healthy, 39 year old man who was loving life,

traveling the world and working at his dream job until a business trip to China in

2004 started a downhill spiral that he continues to fight today. During this trip,

David developed abdominal cramping and diarrhea. Thinking it was a traveler’s

illness, he took some Cipro and continued to teach a course for physicians in a

Shanghai hospital, which was far removed from the nearest C. diff patient treat-

ment areas.

The following day, he awoke with increased abdominal cramping, a slightly

distended abdomen, non-stop diarrhea and a fever. Still thinking it was caused

by something he had eaten, David continued teaching and struggled through

the day with his fever rising, chills, increased distention, frequent diarrhea and

worsening dehydration. The 13 hour plane ride back to the USA was awful, he

was shivering and sweating, he couldn’t stay out of the lavatory, the odor was

nauseating and David’s abdomen looked like he was pregnant.

Once back in the United States, David went to his Family Practitioner who

directly admitted him to the hospital and started him on Vancomycin and Flagyl.

Despite treatment, throughout the night his abdominal pain became unbearable,

his fever was dangerously high and he was experiencing uncontrollable diarrhea.

David was transferred to the ICU where he was told that he was suffering from a

severe case of Clostridium difficile (C. diff) and had toxic megacolon. The C. diff

was resistant to the antibiotic therapy and surgery was imminent! When David

awoke from the surgery, he had tubes and wires coming out of everywhere, his

abdomen had a very long incision with a lot of staples and he had an illeostomy

bag high up in the right side of his abdomen. Even after the surgery, David had

several recurrences of C. diff over the next 4 years, ended up with a total colec-

tomy and several inches of his small intestine removed, and now has a permanent

high-output ileostomy (an opening in the lower abdomen to allow intestinal

waste to pass.)

Almost nine years after first contracting C. diff, David still battles many chal-

lenges resulting from this superbug. He has had several medical issues, including

infections that resulted in the removal of his gallbladder, and severe Torticollis

(cervical dystonia) which causes Parkinsonian-type tremors of his head and neck

resulting from some of his medications. David has had two brain operations to

implant a Deep Brain Stimulator (DBS) to help control the tremors and he has

struggled to maintain his weight due to his body’s poor ability to absorb nutri-

ents, fats and calories since the food passes through his system so quickly.

When asked how he gets up every day, he notes that most days it’s with a

smile on his face. He credits his deep faith, incredible support from family and

friends from all over the world that allow him to push on. He also takes comfort

in connecting with others who are dealing with the same issues he’s dealing with;

they talk with one another, motivating each other to stay positive! David also

faces his fears by learning more about them. While the health issues scare him,

he doesn’t let them control his life to the best extent he can. He shies away from

self-pity and focuses on the happiness he feels to still be here to share his story.

Judy Dexter, a [insert age] mother of [insert number of children] went

to the hospital in December 2012 due to difficulty breathing. She was admitted

for a lung infection and treated with antibiotics for 8 days. Thinking Judy was

on the mend, her family was not prepared for the torment that the following

months would bring.

Three days after being discharged from the hospital, Judy had uncontrollable

diarrhea, resulting in severe dehydration. Her doctor prescribed a series of

diarrhea medicine and instructed her to change her diet to bulk foods. It took

another two and a half weeks, and a return trip to the hospital, for Judy to be

diagnosed with Clostridium difficile (C. diff).

Judy’s family learned about C. diff very quickly, and it became second nature

for them to don protective gowns and gloves before visiting her.

January 2013 brought powerful antibiotics by mouth and enemas. When

those didn’t work, the doctors introduced the possibility of colon removal

surgery. Her family didn’t understand how Judy went from having a lung infec-

tion to this point and they intervened, looking for alternate treatments. That’s

when her new gastroenterologist recommended a stool implant. They made two

attempts, one week apart along with Vancomycin but the C. diff continued to

ravage her colon.

The doctors again recommended colon removal, but with a high mortality

rate in people over age 65, Judy’s family again searched for other options. As

an alternative, Judy underwent a minimally invasive procedure called Diverting

Loop Ileostomy & Colonic Lavage, along with several rounds of powerful

Vancomycin applied directly to her colon. The results were promising as the

colon swelling was reduced and the C. diff appeared to be in remission.

However after having to treat a serious non-related infection with antibiotics,

it returned again. Judy lost so much weight and eventually had to have a feeding

tube inserted.

It wasn’t until after consulting with a doctor from John’s Hopkins that Judy’s

family learned that antibiotics should NOT be used in tandem with stool trans-

plants, and she should not have received ANY antibiotics before or after the

procedure. Her family suspected this before the transplants, but trusted the

doctors caring for Judy.

Judy and her family were fighting a two headed dragon. Each time she would

fight off an infection or start to get stronger from her lengthy hospital stay, the

C. diff would return and knock her back down.

Being confined to the hospital and debilitated with C. diff was excruciating,

and deprived Judy of the thing she loved most, time with her kids & grand kids.

Judy and her family lost the fight with C. diff on May 30, 2013 just six months

after it all began.

Judy’s family found a valuable tool during this experience to aid in the com-

munication with family members — the website Cozi (www.cozi.com).They were

able to organize visits with Judy, share health reports, and journal her progress

for close family and friends. Judy’s family also found tremendous support from

the doctors, staff and especially the nurses at Mercy Medical & Johns Hopkins

Hospital, who truly became a second family throughout Judy’s care.

FACES OF C. DIFF

Megan F. is a 29 year old wife and mother of three small children, who

has struggled with Clostridium difficile (C. diff ) for the past year before receiv-

ing a fecal transplant, which has successfully treated the condition to date.

Throughout her experience, Megan and her family kept asking the question:

how does a healthy 29 year old woman get C. diff ? While Megan is not sure

at what point she contracted C. diff, her first indication that something wasn’t

right was in mid-2012 when she was pregnant. She would often have entire days

of vomiting and diarrhea, which she chalked up to not having a gallbladder and

being pregnant at the time.

On April 27th 2012, the vomiting and diarrhea progressed to include a

burning sensation, which persisted for two days and then stopped, so Megan

thought it was just a stomach bug. On the fourth day, it started again but was

very intense and the burning was extremely bad. That day Megan ended up

delivering her third child, two weeks early. Thankfully he was healthy.

Within one month of his delivery, Megan’s symptoms began again and per-

sisted primarily after eating breakfast each day, which prompted her to keep a

food diary to try to find an association to the pain. Her symptoms continued to

worsen however and after a few weeks it progressed to every meal or snack.

Because of the burning sensations Megan was experiencing, she saw a GI doc-

tor, who initially ordered an upper Endoscopy, which revealed nothing. When

the symptoms continued, she was tested for C. diff, and when the test was

positive, she was started on flagyl. After two weeks, Megan was told the strain

of C. diff she had would not respond to the treatment and was switched to

vancomycin.

The new treatment also proved to be ineffective, even after multiple rounds

of treatment and at this point her doctor recommended Megan consider a fecal

transplant. During her initial treatments, Megan spent large amounts of time in

her ER, and was given multiple rounds of IV fluids and pain medications, result-

ing in her body cycling through bouts of diarrhea/vomiting to constipation,

which meant that her digestive tract was shutting down and her body would

stop processing the food she was eating. Then it would reject it, hence the

vomiting/diarrhea.

Based on her doctor’s recommendation, Megan began to research fecal

transplant providers and costs. She was thrilled to find out that her insurance

would cover it and her hospital provided them. The hospital staff confirmed

Megan was a perfect candidate, and she met with the infectious disease

department to start the process. This is when I hit rock bottom and lost all of

my faith in my hospital and its staff.

Unfortunately, Megan’s meeting with the ID doctor was not a positive

experience and resulted in her losing faith in the hospital and its staff. During

this meeting, she was told that “only patients in their 80’s get fecal transplants”,

and recommended several rounds of antibiotic treatments, which would be

extremely costly and had already proven to be ineffective in Megan’s case.

Megan refused, insisting that if the hospital would not do a fecal transplant,

then she would go elsewhere. During this conversation, Megan also asked the

FACES OF C. DIFF

doctor about disinfecting methods. The doctor told her that she only needed

to clean her bathroom and kitchen, and suggested using Clorox wipes, which

according to the CDC do not work since they DO NOT contain any bleach. This

meeting left Megan feeling hopeless, since this “expert” did not seem knowl-

edgeable about her condition. She felt lost, and believed that she was going to

die of this illness as her grandmother did.

After that conversation, Megan visited with her plastic surgeon, who encour-

aged her to go to GI and to talk with them. She did, and the doctor she spoke

with scheduled her on the spot for a fecal transplant, even going as far as to

give her a specific date, time and instructions. He explained that some doctors

feel only antibiotics can fix C. diff but he had a different opinion. He did encour-

age Megan to continue antibiotics until her transplant, which she did until three

days prior to the procedure.

Megan noted that the prep for the fecal transplant was uncomfortable, but

not painful. It required her to take several rounds of laxatives so she ended up

making lots of trips to the bathroom (at one point she was in the bathroom

every 10 minutes for several hours), which started with major cramping /

burning and having to run to the bathroom after the final round of laxatives.

The pain continued until sixty minutes before my transplant was to start.

Even through the discomfort, Megan was not nervous at any point because

she knew she had to go through with it; she had to live for her children. The

staff was very thorough, nice and respectful leading up to the procedure,

introducing themselves to Megan and making sure that she remained covered

up until she received the IV meds that put her to sleep. In all, Megan felt very

comfortable.

The next thing Megan recalls is being back in a recovery room. She did not

feel sick, and a nurse was there to answer questions and make sure Megan had

everything she needed. The doctor told Megan she looked great - no signs of

colitis, or diverticulosis – and she was released within 30 minutes.

As a result of this one year ordeal, Megan learned that her skin disease is

what caused this. As a result of it, she frequently used a topical version of

Clindamycin, which she can no longer use. Since developing C. diff, Megan

now has to meet with 40 specialists, who will be tasked with finding a solution

to her skin disease and a treatment to put it into remission.

Megan’s message to those going through C. diff infection is to not lose

hope. If you are faithful, pray. It can be comforting. Fight for yourself. If you

feel that getting a fecal transplant is your only option to be cured, then get

one, even if you are embarrassed. It can save your life and it “could” prevent or

stop colitis. If your hospital will not or does not provide transplants, then ask to

be referred to one who will. Megan hopes that sharing her story gives people

going through similar struggles the hope, perspective and a renewed strength

to keep fighting.

FACTS ABOUT CLOSTRIDIUM DIFFICILE (C. diff)

WHAT IS C. DIFF?

Clostridium difficile (C. diff) is a naturally occurring bacterium that is passed

in feces and spread to food, surfaces and objects when infected people do not

wash their hands thoroughly.

C. diff can survive outside of the body for months and people can become

infected by touching contaminated items or surfaces and then touching their

mouth or mucous membranes.

Healthcare workers can spread the bacteria to patients or surfaces through

hand contact.

When C. diff bacteria grows in the bowel, it produces two dangerous toxins

that attack the lining of the intestine and cause diarrhea, causing a disease

known as C. diff associated disease (CDAD). CDAD ranges from mild to chronic

to life-threatening, and can result in serious intestinal conditions such as colitis

(inflammation of the colon), sepsis (blood poisoning), and, in a growing number

of cases, death.

Antibiotics, especially those with a broad spectrum of activity, cause disrup-

tion of normal intestinal flora, leading to an overgrowth of C. diff. This leads to

pseudomembranous colitis, an infection of the colon often caused by C. diff.

•   C. diff-related diarrhea is most strongly associated with use of fluoroqui-

nolones (e.g., Cipro), but is also seen in patients taking clindamycin (e.g.,

Cleocin), third-generation cephalosporins (e.g., Lorabid) and beta-lactamase

inhibitors (e.g., Penicillin).

•   C. diff is increasingly linked to proton-pump inhibitors, including many over

the counter antacids like Prilosec and Prevacid.

Deaths related to C. diff increased 400% between 2000 and 2007, due in part

to a stronger germ strain.

•   Experts estimate that every year, preventable C. diff infection kills more

than 30,000 Americans and costs the healthcare system an extra $1 billion

annually.

HOW DO I PREVENT CDAD?

4 Wash your hands often, especially after using the bathroom and before

eating.

4 Clean surfaces in bathrooms and kitchens regularly with chlorine bleach-

based products.

4 Wash soiled clothing with detergent and chlorine bleach.

4 Ask all doctors, nurses, and other healthcare providers to clean their hands

with warm soap and water before caring for you — alcohol-based hand

sanitizers do not eliminate C. diff.

4 Only take antibiotics as prescribed by your doctor, and ask your doctor if

you have symptoms of CDAD.

INFECTION PREVENTION CHECKLIST

The following information can help you assess your or a loved one’s risk of

contracting C. diff, symptoms to look out for if you are at risk of C. diff infection

and questions to ask your doctor.

You are at risk for C. diff infection if you:

•  Are taking or have recently taken antibiotics or have used a protein pump

inhibitor for any reason.

•  Have recently stayed in the hospital for an extended length of time.

•   Are 65 years of age or older. Older adults have a disproportionately high

infection rate.

•  Have had bowel or gastrointestinal (GI) surgery.

•  Are undergoing or have recently undergone chemotherapy treatments.

•  Have a compromised immune system, including being HIV positive.

Consult your doctor if you experience the following symptoms:

4   Watery diarrhea (more than three bowel movements per day) or blood in

the stool.

4  Fever.

4  Nausea and/or loss of appetite.

4  Abdominal pain/tenderness.

If you are at risk for contracting C. diff or think you may have CDAD, consult

your doctor. Questions to ask include:

•  Do the antibiotics you’re prescribing increase my risk of C. diff?

 •  Why does antibiotic use put me at higher risk of contracting C. diff?

 •  Which antibiotics are most strongly associated with C. diff infection?

•   Since antibiotic use is associated with C. diff infection, which antibiotics

are safe to take if I have CDAD?

•  Am I at risk for C. diff infection?

 •  How can you tell if I’ve been infected with C. diff?

•  How can I prevent C. diff infection?

•  What treatment options are available if I’ve contracted C. diff?

If you or a family member is hospitalized (or if an elderly relative is in a nursing

home), you should ask the following questions:

•  What is the transmission rate of hospital-acquired infections at this medical

center?

•  How can we prevent C. diff infection during the hospital stay?

•  Would you please wash your hands with soap and warm water before

treating me (or my loved one)?

HOW IS C. DIFF TREATED?

The first step in treating C. diff is to stop taking the medication (typically

a broad-spectrum antibiotic) that triggered the infection. For mild illness,

this may be enough to relieve symptoms. But many people require further

treatment, including:

ANTIBIOTICS

The standard treatment for C. diff is another antibiotic. These antibiotics keep

C. diff from growing, which allows normal bacteria to flourish again in the

intestine.

• Fidaxomicin (DIFICID™) is the first antibacterial drug indicated for CDAD to

be approved to treat C. diff in nearly 30 years.

• Metronidazole (Flagyl®) is effective against anaerobic bacteria and certain

parasites, selectively blocking some of the functions within the bacterial

cells and the parasites resulting in their death.

• Vancomycin (Vancocin®) is used to treat to treat bacterial infections of the

intestines, and is typically the drug of choice for severe, complicated C. diff

infection.

The most common side effects of ficaxomicin include nausea, vomiting and

abdominal pain. The most common side effects of metronidazole and vanco-

mycin include nausea and a bitter taste in your mouth. It’s important not to

drink alcohol when taking metronidazole.

PROBIOTICS

Probiotics are organisms, such as bacteria and yeast, which help restore a

healthy balance to the intestinal tract. A natural yeast called Saccharomyces

boulardii, in conjunction with antibiotics, has proved effective in helping pre-

vent recurrent C. diff infections.

FECAL MICROBIOTA TRANSPLANTATION (FMT)

FMT involves restoration of the bacterial flora in the colon of someone infected

with C. diff by introducing healthy bacterial flora through infusion of stool

obtained from a healthy human donor. Donors must be tested for a wide array of

bacterial and parasitic infections. The fecal transplant material is then prepared

and administered in a clinical environment. The procedure involves single to mul-

tiple infusions of the healthy fecal material, and is usually carried out via enema,

colonoscope, or nasogastric or nasoduodenal tube. Most patients with C. diff

recover clinically and have the bacteria eradicated after just one treatment.

SURGICAL INTERVENTION

In the case of severe C. diff infection, surgery may be considered as a

treatment option.

RESOURCES FOR C. DIFF SUFFERERS

In addition to the work of the Peggy Lillis Memorial Foundation, there is a growing

body of resources for C. diff sufferers and their families. Please visit these web-

sites to find support or become an advocate.

Christopher M. O’Neal, Ph.D.Raf Rizk, M.D.Illustrations by Marianne Khalil

From a doctor and a patient, practical, hopeful advice for

your life.

“The Centers for Disease Control and Prevention estimate that half a million Americans will be diagnosed with a infection this year. We are so pleased that Doctors O’Neal and Rizk have written this book. The dearth of easily understandable knowledge about C. diff for those facing the

demic.”From the foreword by Christian and Liam Lillis

translations of confusing medical terms, and stories from

Clostridium

0891337805789

ISBN 978-0-578-08913-390000

Colectomy — In cases in which a patient’s colon has been damaged by inflam-

mation or has become perforated, physicians may recommend a subtotal

colectomy (removal of the infected portions of the colon while preserving the

rectum) or a total colectomy (full removal of the colon).

Ileostomy — If the colon is removed, the patient will need to have an ileostomy,

a procedure in which the small intestine is surgically attached to the abdominal

wall to allow waste to be eliminated through an opening in the abdominal wall

into an ileostomy pouch.

FOR SUFFERERS

Clostridium difficile Support Group

www.cdiffsupport.com

Clostridium difficile: A Patient’s Guide

ISBN 978-0-578-08913-3

Available through

Barnes & Noble,

Amazon.com or

by visiting www.c-

difficile-book.com

Foreword by Christian

John Lillis & Liam Lillis

Facebook C. diff Support Group

http://www.facebook.com/groups/

Cdiffsupport/

Empowered Patient Coalition

www.empoweredpatientcoalition.org

Medically Induced Trauma

Support Services

www.mitss.org

Fecal Transplant Foundation

http://thefecaltransplantfoundation.

org/

FOR ADVOCATES

RID: Committee to Reduce

Infection Deaths

www.hospitalinfections.org

Citizens for Patient Safety

www.citizensforpatientsafety.org

Consumers Union Safe Patient

Project

www.safepatientproject.org

Sepsis Alliance

www.sepsisalliance.org

ACCOMPLISHMENTS IN 2013

In 2013, the foundation continued to grow its presence and impact through a

series of collaborations and by raising awareness in the media by contributing

to reporting on the C. diff epidemic and publishing a series of op-eds. We also

worked with stakeholders and consultants from the National Executive Service

Corps to develop our first 3-year strategic plan. This plan will focus our work

over the next three years to ensure we make the greatest impact with our

limited human and financial resources while working to grow The Peggy Lillis

Memorial Foundation to the scale necessary to move the needle on the C. diff

epidemic. Throughout the year, we also provided support to many C. diff suf-

ferers and solace to many families who lost a loved one. Of course, none of our

work would be possible without the incredible support of our National Advisory

Council, Gala Committee, fellow patient safety activists, and friends and family

members.

BUILDING PARTNERSHIPS TO INCREASE IMPACT

• In December, the foundation was invited to serve as a community rep-

resentative at a conference on Clostridium difficile infections held at the

University of Texas Medical Branch in Galveston, Texas. The conference was

sponsored by Institute for Translational Science, University of Texas Medical

Branch, Texas Children’s Microbiome Center, Baylor College of Medicine &

Texas Children’s Hospital. A significant outcome of the conference was the

creation of a Gulf Coast C. diff Collaborative of doctors, researchers, and

public health experts who are working together to raise awareness and

increase community engagement in combating the C. diff epidemic in their

region. PLMF continues to work with this impressive group as a standing

community representative for the collaborative.

• In February, PLMF co-sponsored Selling

Sickness: People Before Profits, a confer-

ence organized by activist Kim Witzcak and

academic Leonore Tiefer. The conference saw

two hundred activists, academics, physicians,

journalists, and healthcare workers come

together to take on the dysfunction in the

United States healthcare system, particularly

with respect to the epidemic of over-diagnosis

and overtreatment. The conference was an

excellent opportunity for us to meet patient

safety advocates from across the country and build relationships with those

interested in curbing the overuse of antibiotics — a primary driver of the C.

diff epidemic.

• In August, leading vaccine company Sanofi Pasteur interviewed our execu-

tive director for a recruitment video for its Phase III clinical trial of a C. diff

PLMF SUCCESSES

vaccine. The trial’s objective is to evaluate the safety, immunogenicity and

efficacy of a toxoid vaccine for the prevention of primary symptomatic

Clostridium difficile Infection. The investigational vaccine stimulates a per-

son’s immune system to fight C. diff toxins upon exposure and may prevent

a future CDI from occurring. The trial, called Cdiffense, began in August 2013

and is expected to last for three years with participants drawn from 17 coun-

tries. The recruitment video, which includes the stories of Peggy and others

afflicted by C. diff, is being run in hundreds of healthcare facilities, pharma-

cies and doctors’ offices in participating countries.

RAISING C. DIFF VISIBILITY

The foundation continued to play a prominent role in raising awareness of

C. diff in the media, the press, the Internet and social media. Notable accom-

plishments include:

• Publishing a letter to the editor in the New York Times noting that more than

28,000 people die from C. diff every year according to the Department of

Health and Human Services, double the 14,000 number they had recently cited.

• Our executive director was quoted in the Associated Press article, “Hospitals

See Surge of Superbug-Fighting Products”, carried by hundreds of news-

papers nationwide, as well as in a series of articles about a local hospital’s

failure to report C. diff outbreaks in Stockton, California.

• Publishing four editorials including “The revulsion over feces: Get over it”

on the influential KevinMD.com website and pieces in Women’s E-news,

Park Slope Patch and the Rochester Democrat & Chronicle.

• Our executive director also had his first radio interview on Speak Up &

Stay Alive.

• Engaged Congresswoman Louise Slaughter, sponsor of Preserving

Antibiotics for Medical Treatment Act (PAMTA) and coauthor of the

Affordable Care Act, as first elected to receive our Lifetime Achievement

Award and as a partner in efforts to curb the overuse of antibiotics.

BUILDING OUR CAPACITY

• Recruited Dr. Joseph Pulvirenti of Chicago and Alicia Skovera, MSW of New

York to augment clinical and social work expertise and build a truly nation-

wide advisory board.

• Created Thank-A-Mother promotion for Mother’s Day 2013, our first

organized effort to solicit low-dollar donors through low-overhead program.

• Developed our first 3-year strategic plan to focus our organization’s efforts

to educate the public about C. diff globally while working locally to advance

legislation aimed at pushing the healthcare system to reduce infection rates.

In memory of

Elizabeth Anne Hutchins Young

(1939 – 2013)

Your lifetime of service to your family, friends, faith community and the

most vulnerable children of Durham County inspires us to redouble our

efforts to fight C. diff to ensure that people with Parkinson’s disease

and other debilitating illnesses are not further harmed by healthcare

associated infections.

Though you and Peggy only met a few times in life, we imagine you

both kicking back in Heaven watching your children and grandchildren

and cheering us on to be the best that we can be.

All our love to Anne and Peggy, forever and ever,

Chris, Christian and April

Love you and miss you, Mommy.

— Liam and Melissa

Congratulations to The Peggy Lillis

Memorial Foundation on its achievements

and advancements to fight Clostridium

difficile.

Thank you to the 2013 Raffles Committee

for your friendship, contributions and

good work.

Helen Bassi Peggy Lillis

1953 – 2008 1953 – 2010

“60 years remembered with love,

light & laughter.”

— Maryann Bassi

Focused on biologics for the prevention and treatment of serious infectious diseases

www.syntheticbiologics.com

Lead anti-infective biologic candidate

SYN-004 an oral enzyme

for the prevention of C. diff infections

A proud sponsor of The Peggy Lillis Memorial Foundation

ANGELS

Anonymous

Christian John Lillis &

Chris Briggs Young

CAREGIVER

EMERALD

American Postal Workers Union

Randy Demeyers

Joan Rothschild Hardin, PhD

Liam Lillis & Melissa Parmigiani

Synthetic Biologics

United Federation of Teachers

United Steelworkers

Xenex Healthcare Services

GOLD

Maryann Bassi

Helen Beigel

James Cook & Iris Merced

Frances Curry

Jim Daly

Robby Daly

David T. L’Heureux & Diane St. Louis

Dorothy “Baby Ann” Manzo

Brian & Mary Morgan

Diane R. Parmigiani

Moshe Rubin, MD &

Jennifer Mueller, MD

Bob & Ann Tracey

Van West Media

Cynthia Wagner, RDH

FRIEND

Anonymous

Sean & Lynn Brereton

Buckley’s Tavern & Caterers

Daniel & Dorothy Burns

Thomas & Noreen Daly

John DeAngelis & Patty Yu, MD

Denice Hilty, DC/Transformational

Healthcare

Hans Johnson

Michelle Kristel & Genevieve Dinouart

Nora & Helen McCaffrey-Birney

Donna McColgan

Pamela Poland

Rochester & Vicinity Central Labor

Council, AFL-CIO

Erik Satre & Anisha Kansal

Alicia Skovera & Heather Guthrie

SPONSORS

RAFFLE DONORS

Maryann Bassi

Lynn Halligan

Phyllis McEwan

Helen Beigel

Phyllis D’Accordo

Noreen & Tom Daly

Baby Ann Manzo

Donna Rea & Family

James Perri

Tricia Perri

Friends of Peggy from PS 198

Meat Supreme

Coluccio’s

Peggy Lillis Foundation

RAFFLE DONORS

EVENT COMMITTEE

Co-Chairs

Christian John Lillis & Liam Lillis

Vice-Chair

Maryann Bassi

Terri Amari

Victoria Amari

Helen Beigel

Lynn Halligan

Phyllis McEwan

Melissa Parmigiani

Shannon Smith

Christopher Young

We are deeply grateful to everyone who gave so generously of their time and

expertise in helping us develop our new strategic plan, including Victoria Amari,

Helen Beigel, Dr. Martin Blaser, Rosemary Gibson, Joan Hardin, Dr. Denice Hilty,

Hans Johnson, Dr. Cliff McDonald, Lisa McGiffert, Chris O’Neal, Julie Reagan,

Dr. Moshe Rubin, Patty Skolnik, and Alicia Skovera.

We are also grateful to John Chan for donating his fabulous photography

services for the fourth year in a row!

GRATITUDE

Hans Johnson

Evelyn Kulka

Lisa LoBue

David T L’Heureux & Diane St. Louis

Suzanne Mattei

Pamela Poland

Alicia Skovera & Heather Guthrie

AMBASSADORS COMMITTEE

ABOUT THE PEGGY LILLIS MEMORIAL FOUNDATION

The Peggy Lillis Memorial Foundation, created in memory of Brooklyn

Kindergarten teacher Peggy Lillis who lost her life in just six days to a

Clostridium difficile infection in April 2010, is the first national organiza-

tion dedicated to reducing and eradicating C. diff infections, or CDIs,

through education and advocacy. Though largely preventable, every

year CDIs claim the lives of 28,000 Americans, and sicken another sev-

eral hundred thousand. For more information about how you can avoid,

recognize, and prevent CDIs, join us at www.peggyfoundation.org.

CONTACT US

266 12th Street, #6 Brooklyn, NY 11215

t: 917.364.4658 e: cjlillis@peggyfoundation.org

w: www.peggyfoundation.org