Annual Report 2014

Transcription

Annual Report 2014

Annual Report 2014
The Worst Disease
You’ve Never Heard Of
Epidermolysis Bullosa (EB) is a rare, genetic connective tissue disorder
with many genetic and symptomatic variations. All forms of EB share
the common symptom of extremely fragile skin that blisters and tears
from friction or trauma. Those that have the more severe forms of EB
have many secondary complications and illnesses that require seeing
a range of medical specialists. Every internal organ and all bodily
systems can be harmed by this disease.
EB attacks the individual with EB and their family on every level –
physically, emotionally, and financially. Chances are, those with the
most severe forms of EB won’t see their 30th birthday.
EB affects 1 out
of every 20,000
live births in the
United States
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debra of America | Annual Report 2014
Table of Contents
Letter from the Executive Director................................2
Our Programs & Services..............................................4
debra Events.................................................................7
Local Events..................................................................9
Financial Analysis.........................................................11
How You Can Help.........................................................13
Our Supporters..............................................................14
Board & Staff.................................................................43
1
Letter from the
Executive Director
Dear Friends,
This past year we saw commitment, determination, and hard work pay dividends for the
EB Community. We helped more families living with EB through our free Programs and
Services than ever before. debra of America hosted the single largest gathering ever,
and that’s globally, of those with EB at our 2014 Patient Care Conference. I spoke with a
greater number of commercial entities that are interested in developing treatments than
ever before. We realized real progress in the science for a cure and have witnessed more
clinical trials being launched. To say it is an exciting time would be an understatement.
Strategically, debra of America continues
to find new ways to raise awareness and
the necessary monies to help the EB
Community. Our efforts have not been
in vain. We spent more than $1,000,000
on our free Programs and Services in
2014, which have continued to be more
successful year over year. They are being
more widely utilized and are therefore
making a greater impact. We see more
families requesting services through our
Wound Care Distribution Program,
Brett Kopelan introducing Dr. Jakub Tolar,
who spoke about his bone marrow transplant
trial and gene therapy research, at the 2014
Patient Care Conference in Nashville, TN.
contacting our EB Nurse Educator
Program, and registering with our New Family Advocate Program – to name just a few
examples. While it’s obvious that the need is greater, it is also obvious that debra of
America has been able to fulfill the increased need and expand our Program offerings.
I think one of the best examples of our success is the decrease in time in which people
first access our Programs after diagnosis.
The 2014 Patient Care Conference in Nashville, Tennessee, was an unmitigated success.
We saw a 100% gain in attendance. 600 people came to learn from clinicians and
researchers about EB and where research is headed. While parents participated in
2
lectures by esteemed EB speakers, their children were being entertained during
specialized organized events. It was heartwarming to see EB families spend time
together – a rarity in everyday life, where one EB patient may never meet another.
I want to thank our corporate sponsors for their generous support. I also greatly appreciate
the hard work and dedication from all of the people who have thrown Local Events for our
cause and of course my sincere gratitude to all of the individuals who have donated money
or volunteered their time this year.
Without all of you, debra of America would not be able to make an impact in the lives of
thousands. After all, and I think it is important to remember, you are a benefactor of hope
to our EB Community. And I thank you for that.
2014 was a good year. 2015, our 35th year, is going to be even better.
Sincerely,
Brett Kopelan
Executive Director
debra of America
3
Our Programs & Services
Our mission is to support the EB
418 research
Community by$funding
7
,7
$349 2 and by
for a cure or treatment
2014
,0
,7
21
providing free$3Programs
and
15
2013
31
Services to those with the disease.
2012
In 2014, we spent $1,159.760.00
on our free Programs and Services.
Wound Care
Distribution Program
Through our Wound Care Distribution Program, we
provide wound care supplies such as bandages,
needles, and ointments to those with EB who
may not be able to afford them. These specialized
products can cost in excess of $10,000 per month
and in many cases are not covered fully or at all
by private insurance, Medicaid, or Medicare. This
Program aims to bridge these gaps in coverage.
Last year, with the help of your donations, we sent
more than $400,000 of supplies to families in need
across the United States.
INCREASE IN TOTAL VALUE
OF WOUND CARE SENT
$418,727
2014
$349,021
2013
$315,731
2012
Over the last 3 years, there has been a steady
increase in the total value of supplies provided
through our Wound Care Distribution Program.
4
$
$
86.4 cents of every
dollar is dedicated
towards research for
a cure and our free
Programs & Services
MAKE AN IN-KIND DONATION:
Interested in giving to the Wound Care
Distribution Program? You can donate supplies,
2014
and we will cover the shipping! Just email
$418,727
woundcare@debra.org, and we will create
2013
shipping labels for you.
$349,021
2012
Here are a few easy, over the counter items that
$315,731
people with EB are always in need of:
• Aquaphor
• Rubber Gloves
• Gauze Rolls
• Polysporin
$
New Family
Advocate Program
When debra of America learns of a newborn with
EB, we send a care package with the needed
products for the care of the child. Families also
receive practical, hands-on information regarding
wound care, medical supplies, medical insurance,
and additional issues related to the care of infants
with EB. Over the past three years, there has
been a significant decrease in the time between
an EB patient’s diagnosis and the assistance they
receive from debra of America. Through early
support and outreach to new families with EB, it
is our goal to help families provide their children
with the best care at the earliest point possible.
EB Nurse
Educator Program
Geri Kelly RN, our EB Nurse Educator, serves as
a point of contact to assist all of those with EB, their
parents, and caregivers. She also provides healthcare
professionals with helpful and necessary information
to assist them in managing the care of EB patients.
Individuals contact the EB Nurse Educator Program
to learn about wound care, products, services, and
the state of current research – or to just get a little
emotional support. This Program also provides
referrals to medical professionals who specialize
in the various areas of EB care.
NUMBER OF NEW FAMILY BOXES SENT
63
2014
47
2013
42
2012
0
10
20
30
40
50
60
70
TOTAL VALUE OF NEW FAMILY BOXES SENT
$74,870
2014
$58,1767
2013
“I can’t imagine living with EB these past 7
years without Geri. She has been so helpful
when I have a question about wound care
or the best ways to guard against infection.
Being able to call someone who knows so
much about EB has really made living with
this disease just a little easier. I can’t count
the number of times she has helped over
the years, and I am grateful that debra of
America has this Program.”
– Allen, Father of a 7-year-old girl with RDEB
$38,360
2012
0
10K 20K 30K 40K 50K 60K 70K 80K
We have seen a steady climb in the number and
value of New Family Advocate packages sent over
the last three years.
For more information about debra of America’s
Programs and Services, visit debra.org/Programs
or email woundcare@debra.org.
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Letter from Gabrielle
debra of America’s Program Manager
Hi all!
For those of you whom I have yet to meet – my name
is Gabrielle, and I am debra of America’s Program
Manager. I’m the voice on the other end of the line
when you need to order wound care supplies, apply
for the Smile Fund, request a New Family Advocate
Program box, or just chat about EB!
My 23 years of living with EB Simplex has been largely
trial and error – cutting clothes to make them more
comfortable or coming home from a run only to tend
to widespread blisters. Before I worked at debra of
Casey Fitzpatrick, Director of Events
and Communications, and Gabrielle Sedor,
Program Manager, at debra of America’s
2014 Patient Care Conference.
America, I did not know that there were bandages that I could wear other than Telfa and
Spandage. At the 2014 Patient Care Conference, I put the first adhesive on my skin that
did not cause any blistering – that feeling was indescribable! I think that everyone with
EB deserves to feel like that. It may be hard to imagine, but when you have EB, an event
as small as putting on a Band-Aid is something that you have been left out on, something
that you may not even know you’ve longed for. It is empowering to have the tools and
the knowledge to take care of yourself and your loved ones with EB. This is why I value
our Programs and Services so greatly. Helping to improve the daily lives of people with
EB through our Programs and Services is the most rewarding experience that I have
had thus far in my life.
It is my goal to ensure that no person with EB will ever go without the supplies or services
that they need to properly care for themselves. We can always do more and it’s my goal
to make our Programs and Services meet all of the needs of people with EB and have the
greatest impact possible. It is because of your donations that debra of America is able
to offer Programs and Services such as the Wound Care Distribution Program and New
Family Advocate Program, both of which distribute wound care supplies free of charge to
our families around the United States. Every single piece of wound care in our Distribution
Center comes from supporters like you. Through your product donations, we have been
able to keep the Center stocked with supplies that are desperately needed by families
across the United States every single day. Your donations touch the lives of those with EB,
and the impact that they have on families is truly immeasurable.
Thank you for your past, present, and future support.
For more information about our free Programs and Services, and how to get
involved, contact gabrielle@debra.org.
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debra Events
Thank you to our generous event sponsors, attendees, committee members, volunteers,
and donors for continuing to help debra of America fund research and provide free,
supportive Programs and Services for those with Epidermolysis Bullosa. To learn more
about these events, please visit: debra.org/HostedEvents.
debra of America
Annual Benefit
On October 22, 2014, over 400 guests attended the
16th Annual debra of America Benefit presented by
Mölnlycke Health Care at B.B. King Blues Club in
New York City. It was a memorable night! Co-Chairs
Faith Daniels (debra of America Board Member)
and Alan Kalter (voice of Late Show with David
Letterman) honored the retirement of James Wetrich
from Mölnlycke Health Care, and presented Robbie
Twible with The Spirit Award and the Friedel Family
with The EB Awareness Award. Dr. Richard Azizkahn
and Dr. Anne Lucky, co-directors of the EB Center,
accepted the Partners in Progress Award on behalf
of Cincinnati Children’s Hospital Medical Center.
The night featured casino games, a silent and live
auction, and a musical performance by Jeffrey
Gaines. We’d like to thank everyone who made
our Annual Benefit a successful celebration!
NYC Full & Half Marathons
Every year, debra of America is proud to be a
Charity Level Partner in the TCS New York City
Marathon and United Airlines NYC Half Marathon.
Each race team consists of 10 dedicated runners
who train and fundraise to support EB. Since
2012, our TEAM DEBRA runners have raised over
$100,000 for our free Programs and Services and
for research to find a cure.
“I was very honored to run the 2015 NYC
Half Marathon on behalf of #TEAMDEBRA.
Racing through the streets of New York City
is an exhilarating feeling and knowing that
I was raising awareness and money for EB
research made it even more special!”
Robbie Twible (2014 Spirit Award Winner) and
Thomas Misisco (debra of America Board Member)
enjoying the 2014 debra of America Benefit at B.B.
King Blues Club in NYC.
– Natalie Busby
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Over 600 people attended debra of America’s
2014 Patient Care Conference in Nashville,
Tennessee. It was the largest gathering of
people with EB in history.
debra of America Patient
Care Conference (PCC)
Every two years, debra of America invites those
with EB, as well as their families, advocates, and
care providers to our Patient Care Conference
(PCC). Attendees listen to and meet with medical
professionals who have developed expertise in
particular areas of EB care, with academic
researchers, and with organizations conducting
research into treatments and a cure. Bandage
manufacturers and wound care distributers attend
as exhibitors to demonstrate their products and
services to the community. Most importantly, the
conference allows those with EB to meet new
families and reconnect with others from around the
country that share similar circumstances. The 2014
debra of America Patient Care Conference (PCC)
was held from July 30 to August 2 in Nashville,
Tennessee and was the highest attended conference
to date with over 600 guests, making it the largest
gathering of people with EB in history.
Annual Mats Wilander
Foundation Tennis Pro-Am
On August 27, 2014, guests filled the grass courts
of the legendary 100-year-old West Side Tennis
Club in Forest Hills, NYC for the 2nd Annual Mats
Wilander Foundation & debra of America Tennis
Pro-Am. The event, held during the US Open, is
a full-day of clinics, drills, and matches against
former world-ranked pros including former world
#1 champion, Mats Wilander. The charitable arm of
Wilander on Wheels is dedicated to raising funds
for EB research because of Mats’ 18-year-old son,
Erik, who has EB Simplex. This event is open to
tennis fans of all ages and experience levels.
Mats Wilander (Former World #1 Champion) and
Cameron Lickle (Wilander on Wheels) with former
pro players at the 2014 Mats Wilander Foundation
Tennis Pro-Am.
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Local Events
TOTAL RAISED
$20,310
2014
$9,456
2013
We would like to thank all of our national volunteers for their dedication to the cause and
0
5K
10K
15K
20K
the hard work and commitment it takes to throw Local Events. More than 40 take place
25K
every year and it’s these type of events that allow us to come one step closer to achieving
TOTAL DONATED VIA CREDIT CARD
our mission.
$19,140
2014
$7,356
2013
Jogging for Jonah
0
5K
10K
15K
20K
The 2014 Jogging for Jonah was a huge success!
Jogging for Jonah is a successful community
event that brings supporters back year after year
in support of a little boy, Jonah, who lives with EB.
Over the past 4 years, Jogging for Jonah supporters
have raised over $50,000 to help debra of America
serve the EB Community. Jogging for Jonah was
one of the first events to make use of our new
Personal Fundraising platform, and the difference
showed. They doubled the amount of money
raised and added participants thanks to this new
fundraising tool! In 2014, this event raised over
$20,000 (compared to just under $10,000 in 2013)
and saw a 15% increase in participation, growing
from 230 to 270 runners.
$19,140
TOTAL RAISED
JOGGING 25K
FOR JONAH DONORS
20K
TOTAL RAISED
TOTAL DONATED
VIA CREDIT CAR
20K489
5K
10K
15K
20K
25K
TOTAL DONATED VIA CREDIT CARD
15K
165
$7,356
2013
0
5K
5K
10K
15K
The use of the new Personal Fundraising platform
led to a 100% increase in revenue, and the amount
of credit card gifts more than doubled.
20K
10K
2013
10K
$19,140
2014
2014
15K
0
$7,356
0
$9,456
$9,456
2013
$20,310
$20,310
2014
5K
300%
INCREASE!
0
2013 2014
2013 2014
The use of the new Personal Fundraising platform
increased the number of Jogging for Jonah donors
by over 300%!
9
Butterfly 5K
CovyCon
The First Annual Butterfly 5k took place this past
September at Salt Fork State Park in Cadiz, Ohio
and raised over $7,000 in honor of Hannah Blake,
who lives with EB. They didn’t just work hard in
September though! This event team held events
throughout the year in support of their 5k and
debra of America, including a Celebrity Server
Night where local celebrities donated their time
as waiters to fundraise for EB. Good job team!
The 1st Annual CovyCon is proof that an event
doesn’t have to be a 5k to be successful. The
friends and family of Michael “Covy” Covert
came together to throw a tournament of his
favorite game, Magic: The Gathering, in his
memory. Their event raised over $1,000 for EB
research and also served as a loving reminder
of an extraordinary person.
Thank you to all of our Local Event Organizers,
who worked so hard this year to raise awareness
and over $350,000 for EB. We couldn’t continue
to fight EB without you!
INTERESTED IN HOSTING A LOCAL
EVENT OF YOUR OWN?
We’re happy to help! Check out
debra.org/PlanLocalEvent for ideas, or contact
us at events@debra.org or 212-868-1573.
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Financial Analysis
REVENUE
2012
2013
2014
Special Events
119,737.00622,050.00486,111.00
Contributions & Grants
948,110.00716,217.00819,178.00
In-Kind Contributions
Investment Income
Other
Net Assets Released
TOTAL REVENUE
32,943.00370,269.00437,302.00
2,892.00 3,917.00-2,683.00
n/a11,886.0013,488.00
116,711.0036,556.0038,699.00
1,220,393.001,760,895.001,792,095.00
TOTAL ASSETS
Total Liabilities 2012
2013
2014
1,187,157.001,547,797.001,722,111.00
171,140.00
127,893.00
61,663.00
Unrestricted Net Assets
911,964.00919,775.00966,124.00
Temporarily Restricted Net Assets104,053.00 500,129.00 694,324.00
Total Net Assets
TOTAL LIABILITIES AND NET ASSETS
1,016,017.00
1,419,904.00
1,660,448.00
1,187,157.001,547,797.001,722,111.00
EXPENSES
2012
2013
2014
Education
147,880.00
12%167,613.00
10%235,606.00
13%
Patient & Family Services
500,010.0041%
Advocacy
Research
908,129.00 52% 1,159,760.00 65%
22,182.00
2%25,142.00
1%35,341.00
2%
313,709.0026%
97,236.00 6%
117,803.00 7%
TOTAL PROGRAMS EXPENSES 983,781.00 81%1,198,120.00 68%1,548,510.00 86%
2012
2013
2014
Management
36,970.00
3%41,905.00
2%77,096.00
4%
Fundraising
73,939.00
6%122,044.00
7%120,140.00
7%
TOTAL EXPENSES
1,094,690.00 90%1,362,069.00 77%1,745,752.00 97%
11
Expenses
$1,745,752
Net Assets
$1,660,448
2013
2013
$1,660,448
INCREASE IN PROGRAM SPENDING
1.5M
2M
0
$1,198,120
Total Revenue
$1,760,895
$983,781
Expenses
$1,362,069
Net Assets on Programs
Spending
$1,419,904
2012
0
1M
500K
500K
Expenses
1.5M
1M
1.5M
2012
2013
Net Assets
0
500K
1M
1.5M
2013
2M
300K
2M
Expenses
$1,362,069
$1,660,448
0
12
Total Revenue
$1,760,895
Expenses
$1,362,069
ANALYSIS
Net Assets
$1,419,904
Total Revenue
$1,760,895
500K
1M
1.5M
$1,745,752
2012
2014
Expenses
1M
1.5M
2M
2M
Net Assets
0
Total Revenue
$1,792,095 0
$1,760,895
$1,419,904
500K
2012
500K
1.2M
THREE-YEAR FINANCIAL
2M
Total Revenue
$1,792,095
ExpensesTotal Revenue
$1,745,752
$1,220,393
Net Assets
$1,660,448 Expenses
$1,094,690
2014
0
900K
600K
1.5M
$1,362,069
Net Assets
and Services has risen
1M
1.5M
2M
THREE-YEAR FINANCIAL ANALYSIS
every year.
Total Revenue
$1,220,393
Expenses
$1,094,690
Net Assets
$1,016,017
300K
1M
Total Revenue
0
0
$1,745,752
Net Assets
$1,548,510
500K
$1,792,095
Expenses
2013
0
Total Revenue
0
300K
Total Revenue
Net Assets
$1,220,393
$1,419,904
Expenses
$1,094,690
500K
1M
1.5M
Net Assets
$1,016,017
600K
900K
1.2M
$1,016,017
600K
900K
1.2M
1.5M
Total Revenue
$1,220,393
2012
2014
THREE-YEAR FINANCIAL ANALYSIS
2014
2014
THREE-YEAR
INCREASE FINANCIAL ANALYSIS
IN PROGRAM
Total Revenue
SPENDING
$1,792,095
Expenses
$1,094,690
Net Assets
$1,016,017
2M
1.5M
0
300K
600K
900K
1.2M
1.5M
How You Can Help
VOLUNTEER
Get Engaged. Get Involved. Raise EB Awareness!
• Local Events:
Help raise EB Awareness by hosting, attending, or volunteering at a
Local Event.
• NYC Benefits:
Attend or volunteer at one of debra of America’s NYC events, including
our Tennis Pro-Am and Annual Benefit.
JOIN A COMMITTEE
• Young Leadership Committee (YLC):
The YLC is comprised of young professionals who host and participate
in debra of America events across the country and whose mission is to
fundraise and make an impact on behalf of those with EB.
• EB Impact Committee:
EB Impact Committee members advocate for the EB Community. They are
members of EB families and can truly speak to the daily struggles of having EB.
For more information about volunteering or joining a committee, please
email events@debra.org.
MAKE A GIFT
A gift from you directly impacts EB families.
Here are a few ways that you can help…
Sponsor an activity at the 2016 Patient Care Conference
in Dallas, Texas.
$2,500
Provide a New Family Advocate box, which contains helpful
$1,200 EB information, products, and guidelines on wound care to a
new EB family.
$500 Help find a cure by supporting research.
$
Make a gift to the Smile Fund and help grant a wish for a
250child
with EB.
$173Help 1 EB family beat a denial of insurance coverage with our
Legal Aid Program.
$100
35
$
Send free wound care supplies to 4 EB families.
Send 1 specialized, microsuede diaper to 5 babies with EB.
To make a gift, go to debra.org/Give.
For more information about supporting debra of America, please email
donations@debra.org.
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Our Supporters
$50,000 +
$5,000 - $24,999
Mr. Stan and
Mrs. Jackie A. Lautar
Mr. John Lee
Alexion Pharmaceuticals
Lockwood Family Foundation
McKesson Patient Care
Solutions Inc.
Mr. William Aliski
Ms. Christine Long
Anonymous
Mr. Michael Maldonado and
Ms. Jamie Calandruccio
Mölnlycke Health Care
The Benevity Community
Impact Fund
Scioderm
Capital One
Mr. Michael and
Mrs. Kim Mansfield
CCS Medical
Dr. Ryan and Mrs. Lisa Miller
$25,000 - $49,999
Mr. John F. Crowley
Network For Good
DIRECTV
Mr. J. Alec and
Mrs. Cindi Alexander
Mr. Stephen Dowicz
Mr. Duncan and
Mrs. Alison Niederauer
Fibrocell Science
Edgepark Medical Supplies
Hollister Wound Care
Evidera, Inc.
Randal Tripp Roth
Benefit Fund
Mr. Richard and
Mrs. Deborah Gallagher
Shire Pharmaceuticals
Theorem Clinical
Research
Mr. Mats and
Mrs. Sonya Wilander
Ei SolutionWorks
Goldstein Family Foundation
Mr. Evan and
Mrs. Madeline Grayer
Orsini Healthcare
Parent Teacher Organization
of Goddard
Peco Foundation
Redmond Properties Inc.
RGH Enterprises
Mr. Morton Rosen
Rosen, Livingston & Cholst LLP
Mr. Alan and
Mrs. Connie Herbert
Dr. Daniel Siegel and
Ms. Susan Bryde
Hunt Street Fund
Mr. Andrew and
Mrs. Kim Tucker
Mr. Donald J. Kelleher
Ms. Leslie Ziff
DONOR SPOTLIGHT
“My sister was born in 1938 with a severe form of EB and died of melanoma
in 1978. I had been looking for an organization that supports EB research and,
as a tennis fan, had read of Mats Wilander’s involvement with debra of America.
Mats connected me with Brett Kopelan, debra of America’s Executive
Director, and I became a donor several years ago. I watched what Brett was
doing for debra of America, was happy with the organization’s progress, and as
a result I gradually increased my financial support. Last year, Brett asked me to join
the Board of Directors. It’s been a pleasure to be a part of an organization that does
so much for the EB Community. I hope that someday we will find a cure.“ – John Lee
14
$1,000 $4,999
Anonymous
Mr. Antonio Argiz
Ms. Ciara Aulds
Mr. Brian Balch
Employees of
Bank of America
Mr. Kumsal
Bayazit Besson
Ms. Kathleen DiGiovanna
Mrs. Cathleen Donnelly
Mr. Mitchell Dorfman
Mr. Ron and
Mrs. Beth Dozoretz
Mr. Philip and
Mrs. Amy L. Duff
Mr. Brett and
Mrs. Jacqueline
Kopelan
Mr. Bradley Prunty
Mr. Luis and
Mrs. Rose Kramarz
Ms. Cynthia Raschke
Mr. Steven and
Mrs. Marisa Lastres
Ms. Abby Roberts
Leibowitz & Greenway
Family Foundation
Mrs. Jean Roccon-Rohm
Mr. Jim and
Mrs. Polly Fanning
Mr. Keith Lind
Mr. Michael and
Mrs. Frances Russell
Mrs. Wendy Farr
Mr. Michael and
Mrs. Laurie Berryhill
Ferris Manufacturing
Corp.
Mr. Joseph Listengart
Ms. Felicia Bersh
Dr. Stephen W. and
Dr. Marianne Garber
Ms. Musa Mayer
Ms. Kathryn Brill
Ms. Jill Brotherton
Mr. Kevin and
Mrs. Michele L. Brown
Mr. Anthony M. Rispoli
Mr. Scott Eichel
The Fay J. Lindner
Foundation
Bistro Five
Mr. John and
Mrs. Donna Raab
Employees of
Goldman Sachs
Mr. Richard A. and
Mrs. Isabel Goldstein
Mr. Thomas Marano
Mr. and Mrs. George D.
Maynard
Employees of MBIA
Mr. Mark McGorry
Mr. Jeffrey Rosenberg
Aero Gear
Mr. Frederick and
Mrs. Laurie Schoenhut
The Ethan & Wendy
Schwartz Family
Mr. Christopher and
Mrs. Erin Scott
Ms. Martha L. Hall
Employees of Merck
Ms. Claudia Shelton
Ms. Dana Harchuck
Mr. David Messer
Employees of Microsoft
Carr Specialty Baits, Inc.
Harmony Lodge
#19 100F
Sherwin-Williams
Detroit District
Mr. Christian Carrillo
Mr. Frank Hickman
Milligan Free Will
Baptist Church
Siemens Caring
Hands Foundation
Ms. Ana Carvalho
Mr. Dwight and
Mrs. Mindy Hilson
Mr. Thomas M. and
Mrs. Karen Misisco
Dr. Donald and
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15
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16
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DONOR SPOTLIGHT
“debra of America came into our lives like an angel from heaven!
After my daughter Cattaleya (“Catt”) was born, doctors at RUMC
NICU connected us with Columbia Presbyterian Dermatology who
then contacted Geri Kelly, debra of America’s EB Nurse Educator. Geri
and debra of America educated us on EB, provided us with tips on
how to take care of Catt, and most importantly answered our millions
of questions.
What does debra of America mean to me? Wow. This might turn into a romance novel. Most
importantly, debra of America means hope. Hope that through their efforts of raising awareness
and raising funds for research, we can obtain the goal of finding a cure for EB.
debra of America has become very dear to me. As all new EB parents know, not being able to
obtain the necessary supplies to take care of our babies is the last thing we need to go through
when facing this horrible disease.
Often, my insurance company declares that Catt’s wound care supplies are ‘over the counter’
and are therefore not covered. Hmm. Over the counter? I can just imagine walking into CVS and
asking for Mepilex Transfer, MediHoney, and Tubifast – to name a few.
Well, this is where debra of America stepped in. One day, in the midst of my insanity over fighting
with my insurance company and researching the prices of such ‘over the counter’ supplies, I
called the debra of America office. Casey answered the phone. I was crying and asked him if
there was a way for me to buy the supplies from debra of America at a more reasonable price.
He paused, then said, ‘You have nothing to worry about. I’m going to email you a form. Fill it out
and email it back to me. I will check what we have in stock and will send you a box.’
I couldn’t believe what I had heard! Prior to my call, I had made a list of all non-essential ‘luxuries’
our family needed to get rid of in order to afford Catt’s necessary wound care. I didn’t care. I
could do without cable.
I had no idea debra of America could send supplies. And BOOM! The next day there was a box
on my porch. I wept. It gave me a few more weeks to battle the insurance company. It gave me
confidence and hope. Needless to say, debra of America, to me, means love.
I just want to say that even though this has been the longest 7 months of my life, I have been
blessed with the strongest little girl ever. Cattaleya is such a happy baby. Even when her skin is
raw and she is in pain, you can blow her a kiss and she will smile. She has shown us so much
strength and courage. It’s very admirable. I am truly honored that God thought I was strong
enough to be her mom, and I will not let him down.
We will find a cure!” – Linda Velazquez
17
$250 $499.99
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BD
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19
DONOR SPOTLIGHT
“I have Dominant Dystrophic Epidermolysis Bullosa and when I was
born, not much was known about the condition. My parents were
first-time parents and knew little about parenting, let alone EB. They
were referred to a doctor who had previously seen only one case of
Epidermolysis Bullosa (EB). My Mom asked the doctor, ‘How is that
child doing?’ and the doctor, who obviously needed better bedside
manner, replied, ‘Oh it died.’ So, of course my Mom was devastated
and expected the same outcome for me.
It was kind of difficult growing up, but my parents were troopers. They let me be a child knowing
that I could get hurt – they wanted me to know that I could do and be anything. They didn’t
want me to feel sorry for myself. And here I am, fifty-something years later.
My Mom and I heard about debra of America thirty years ago and we decided to support the
organization with the hope that someday a cure for EB would be found. We were so excited
that debra of America was really doing something about this condition that no one knew about!
While I haven’t used debra of America’s Programs and Services myself, I greatly respect their
EB Nurse Educator Program. Having someone you can call that will answer your EB questions
– when so many doctors and nurses know little about this condition – is empowering, provides
hope, and makes families feel less alone.
When I was born, there were no support services! Parents of EB children and EB patients were
on their own, and you didn’t have anyone to discuss issues with or ask questions to. So having
support out there like debra of America’s EB Nurse Educator Program – it’s the best thing in
the world!
In October 2014, during EB Awareness Week, I hosted a wine tasting to help raise awareness.
It turned out better than I had expected. So many people attended to support the cause and
to support me because they know what I’ve been going through all these years. I always tell
people, ‘There are children with EB that are so much worse. There are children whose fingers
are webbed together, and they can’t walk. There are some that don’t live past their teenage
years. I’m lucky!’ When you’re compassionate about EB, it makes people want to listen and
get to know how they can get involved.
Yes, sometimes people stare, but I’d rather people ask about my EB. I want to tell them about
it! I want to explain that now there’s research being done, there are organizations like debra of
America and one day there will be a cure!” – Laurie Mucherino
20
The James & Kristi
Bell Family
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& Family
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Mrs. Dolores D. Berlin
Mr. Ethan Brewer
Mr. Ralph Calderon, Jr.
Ms. Joan Calhoun
Mr. John and
Mrs. Luba Chernekoff
Ms. Nancy Cook
Brighton Hill Pediatrics
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Mr. Jeffrey Brinkmann
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Bristol Myers Squibb
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Mr. Jim and
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Cincinnati Marathon Inc.
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Mrs. Kori Bishop
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Mrs. Jessica Brooks
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& Family
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Craighead
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Coco, Early &
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Coffin School Social
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CustomInk, LLC
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Booster
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Bornstein
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Bubble Pop Software
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Carroll High School
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Mrs. Juliana Dancanet
21
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Mrs. Kayla Fahy
Abe & Sylvia Ginsburg
Foundation
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The Butterfly Dreams
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Mrs. Jeanine Frohne
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Fisher & Phillips LLP
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Foundation
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Florida Commercial
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Foe 1136 Ladies
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Elements, LLC
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Greenberger
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Greenfield
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Mrs. Felecia Dorchuck
22
Ms. Diane Doucette
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The Scott & Jenny
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Greenfield
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Khronos, LLC
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Houseman
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Kahn Education
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Knights of Columbus
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Santa Maria
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The Johnson Company
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Labur Professional
Staffing LLC
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23
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G. Lagana
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Family
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Shantel McGowan
Family
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& Family
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Local Smoke BBQ
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24
Ms. Constance Lipnicki
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Madison Gas and
Electric
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Salazar-Poss
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Print Mart Inc.
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Ms. Carol Dover
Ms. Jo-Ann Cutshall
Mrs. Carla Eccleston
Mr. Frank D’Ovidio
Mr. Tim Cuttle
Mr. Andres de Lasa
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Didomenico
Ms. Kristine Echeverria
Mr. John and
Mrs. Monica C. Cyr
Mr. Alejandro de Sarriera
Ms. Amy Ecklund
Mrs. Donna Didomizio
Mr. Robert E. and
Mrs. Becky Dowell
Mr. Dana de Windt
Mrs. Roberta Dowgiert
Ms. Jennifer Cysensky
Mr. John Diebold
Ms. LeeAnn DeCair
Ms. Megan Downing
Mr. Armand D’Accordo
Ms. Laura Dietz
Mr. Nick and
Mrs. MaryAnn
Economos
Ms. Carol A. Decicco
Mr. Scott Dietz
Ms. Erin Doyle
Mrs. Angela Edgington
Ms. Florence D’Agostino
Ms. Catherine DeCoster
Mrs. Patricia DiGiovanna
Ms. Megan Doyle
Ms. Lisa Edheimer
Mrs. Kara Dagostino
Ms. Ellynne Dec-Prat
Ms. Sarah Daily
Mrs. Sarah Dillhoff
Mr. Michael D’Egidio
Educational
Testing Service
Mr. Michael and
Mrs. Debra Dale
Ms. Lori Dillon
Mrs. Susan
Drabic-Beresford
Mr. Richard D’Egidio
Ms. Donna Dimella
Mrs. Mary Draheim
Ms. Megan Edwards
Mr. Troy Draizen
Ms. Marci Efthymiou
Mr. Bob Drake
Mr. Edmund and
Mrs. Mary Egan
Ms. Vanessa D’Egidio
Mrs. Aissa Diouck
Mrs. Patricia Degree
Ms. Blanca DiPatri
Mr. George Daly
Mr. John and
Mrs. Antoinette
P. DeGuardi
Mr. Nicholas and
Mrs. Connie Dipiazza
Mr. Martin Daly
Ms. Tiffany Deitrich
Ms. Helen Dalton
Mr. Ben and
Mrs. Julia Dalton-Brush
Ms. Michele Dameron
Ms. Kathleen Dames
Ms. Christine Daniscsak
30
Mr. Jaime David
Mr. Joey Del Rio
Mrs. Caroline Delacruz
Mr. Jeff Della Rovere
Ms. Rosinda DiPomazio
Mr. Will DiPronio
Ms. Crocetta Distefano
Ms. Rita H. Dixon
Ms. Tisha Dixon-Williams
Mr. James Daniscsak
Ms. Anna Dellicker
Mr. Adam Dansby
Mr. Bob D’Aprile
Mr. Tom J. and
Mrs. Mary T. DeLucia
Ms. Jennifer Dare
Ms. Carla DelVecchio
Mr. Steve Dobson
Mrs. Leah Dare
Mrs. Jessica Dohy
Mrs. Sherri Dare
Mr. Dominick and
Mrs. Rose DeMaio
Dart Electrical
Service Corp.
Mr. Kevin and
Mrs. Dana Demaria
Mr. Peter Dolgoff
Mrs. Diane Djamoos
Ms. Deborah Dobson
Ms. Nicole Doiron
Ms. Lynne Drake
Mr. Toby Dranovsky
Mr. Robert J. and
Mrs. Nancy Dresmann
Mrs. Jennifer Dyer
Ms. Laurie Dziadowicz
Ms. Ruth Eastman
Mr. Nick and
Mrs. Libby Ehlers
Mr. Robert Ehrhardt
Mrs. Karen Dresser
Mr. Andrew Ehrlickman
Ms. Jessica Drevins
Mr. George and
Mrs. Kathy Eichler
Ms. Elizabeth Drevits
Ms. Jan Driver
Mrs. Shana Druckerman
Mrs. Laura Einstein
Mr. Joshua Eisen
Ms. Gabby Dubick
Mr. Elliott and
Mrs. Rhonda Eiss
Mr. Matthew Duchane
Mrs. Aimee Elam
Ms. Jeannie Dudley
Ms. Claudia Elera
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Mr. Stewart Ellington
Mrs. Dolores Duggan
Mr. Frederick Elliot
Ms. Selma Ellis
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Ms. Mary Fitzpatrick
Mr. Joseph Fratamico
Ms. Sara Ganus
Elmcrest Children’s
Center, Inc.
Ms. Amy Farmer
Mrs. Madoka Fiuczynski
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Mrs. Linda Ganz
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The Freedman Family
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Mrs. Nancy C. Flatley
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Mrs. Jane Gardiner
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Gardner
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Fleuristoe
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Mr. Michael Feiger
Mr. Jon and
Mrs. Sara French
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& Family
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Mrs. Stephanie Frisbee
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Mrs. Iva Ferguson
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Mr. Sean and
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Mrs. Ann Fernkas
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Dr. Adolfo Ferrando
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Mrs. Lori Evans
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Mrs. Jenn Feltis
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Mrs. Nina Gardiner
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Gauthier
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Gearing-Shepard
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Ms. Kaitlin Fine
Mr. Jeff Foster
Mr. Jean Raymond Gagne
Mr. Jack G. Gentul
and Ms. Rebecca C.
Loomis
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Mrs. Brooke Everhart
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Mrs. Mary Ann
A. Fowler
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& Family
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Mrs. Anne Ewing
Prof. Erin M. Finn
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Mrs. Patti Gallagher
Mr. Richard Fox
Mrs. Kelly Gallat
Expedia, Inc.
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Mrs. Stephanie Fischer
Mr. Geoffrey and
Mrs. Audrey Eyler
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& Family
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31
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& Family
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& Family
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Dr. Kenneth R. and
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Goldschneider
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Gravis Marketing
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Mrs. Laura H.
Gilbertson
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Mrs. Cindy Green
Mr. Dale Guthman
Dr. Adam Harris
Mr. Brand Gonzalez
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Ms. Debbie Guy
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Ms. Gina Gill
Miss Isabel Gonzalez
Ms. Zandra Greene
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Guzman-Howard
Mr. Jason Harris
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Mrs. Jacqueline A. Gill
The Nelson Gonzalez &
Elba LaSalle Family
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Mrs. Jennifer M. Gilles
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Mr. Rick and
Mrs. Beth Gibbs
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Good St.
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Goodshop
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Mrs. Lindsey Gregg
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Mr. Steve A. and
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Mrs. Tressa L. Gladysz
Mr. Alex Glancz
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Mrs. Elisha Glazer
& Family
Mr. Jerome and
Mrs. Gail Glazer
32
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Mr. Christopher Gosselin
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Mrs. Lesta L. Gotsch
Dr. Renee Gottliebson
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Mrs. Leslie Haedrich
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Mrs. Mandy Haggerson
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Mrs. Rita Griesinger
Dr. Barbara Hamill
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Mrs. Deborah Hamill
Mr. Matthew Hamill
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Mrs. Betty Haswell
Mr. Peter Hatch
The Douglas &
Mindy Hathaway
Family
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Mr. Scott Haven
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Ms. Vickie Hawkins
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Hammersmith
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Hearsey
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Ms. Donna Groon
The Larry &
Tracy Heck Family
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& Family
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Henderson
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The Kendall &
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Ms. Rebecca A.
Hodges
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Ms. Sunitha Jasti
& Family
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Mrs. Charlene Jordan
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Mrs. Elaine Jawetz
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Mrs. Betty M. Jorgenson
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Dr. Miriam and
Mr. Moti Hoffman
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Mrs. Lisa A. Jourdan
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Mrs. Jess Jaymalin
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Mr. John Joyce
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Jeffries-Summers
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Mrs. Lisa Holden
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Mrs. Linda K. Jung
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Mrs. Adele M. Jelonek
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Hollander Electric, LLC
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Kalamazoo Gift
Company
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Mrs. Lynn Hewitt
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Mrs. Colleen Holzman
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Mrs. Natalie Hyder
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& Family
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Dr. Susan Kang
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Kanthan & Family
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Ms. Kellye Stone
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Ms. Susan Kaplan
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Mr. Joe Karaganis
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Ms. Mary Herman
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Mr. Lawrence Hibbard
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Mr. Patrick and
Mrs. Cynthia P. Hillen
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Mr. Phillip B. Houck and
Ms. Claudia Gallego
Mrs. Elaine Hubbard
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Mr. Brian Houston
Mr. Kyle Jackson
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Mr. Jeffrey Jacob
Mrs. Scott Howard
Ms. Beryl Jacobs
Mrs. Katherine Hilton
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Mr. Jasper Jacobs
Ms. Andrea Hine
Ms. Betty Howell
Ms. Sally Jacobs
Mr. Simon Hill-Norton
Hilna Motor
Service Corp.
Ms. Joyce Jones
June Air Refrigeration
Ms. Patsy Justice
Mr. Timothy Kalberer
Mrs. Jessica Kaplan
33
Mrs. Angela Kates
Mr. Omar Khshi
Mr. Edward Krick
Ms. Laura Kathryn
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Mr. Andreas Katsouris
Mrs. H. Kilfara
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Mr. David Katz
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Mr. Kenneth Krstolic
Mrs. Ellen Katz
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Mr. Matt and
Mrs. Angie Kimel
Mrs. Vicki Kaufmann
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Mr. Ajay Kayal
Mrs. Erin King
Ms. Betsy Kryger
Ms. Elizabeth Kaye
Mrs. Nicole King
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Mrs. Amy Kubel
Mr. Bill and
Mrs. Ann Keeney
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Mrs. Claudia Leicht
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Ms. Amy Leifer
Ms. Jessica
Lang-Segawa
Mr. James and
Mrs. Raquel Leishman
Mrs. Kelly Lannin
Mrs. Lauren Leising
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Mr. William and
Mrs. Harriet Lembeck
Mr. Joel and
Mrs. Doris H. Lantz
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Mrs. Anna M. Largay
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Mr. Andrzej Kulik
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Mr. Jaime Klein
Ms. Oi-Ling Kwan
Mrs. Eileen Kelly
Mrs. Marjorie Klein
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Mr. Matthew Klein
Ms. Anna Kwawer
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Mr. Trevor Kelly
Ms. Marcia Kligerman
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Mrs. Roberta Lackey
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Mr. Ryan Kennedy
Mrs. Carol Knott
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Mr. Jacob T. and
Mrs. Melissa R. Kerns
Ms. Kelly Kolopus
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Mr. Max Kerr
Ms. Lisa Kerson
Mr. Mark Kessler
Mr. Noah Kessler
Mr. Paul Kessler
Ms. Betty Ketner
Mrs. Lisabeth Kettledon
Keurig Green
Mountain, Inc.
Mrs. Karen Keve
Kevin McAuliffe
Sales, Inc.
34
Mr. Robert S. and
Mrs. Susan P. Krug
Mr. Jerry T. and
Mrs. Karen S. Lang
Ms. Kathleen Ladd
Ms. Ellen Laden-Zivitz
Mr. Kevin LaFontaine
Ms. Arielle Lafuente
Mr. Stephen and
Mrs. Anne Lake
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Ms. Kelly Lengsfield
Mrs. Jody Lenko
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Mr. Kenwood Lattimore
Ms. Allison
Lesko-Walz
Ms. Laurel Lattimore
Mrs. Suzanne Leslie
Ms. Jenny Lau
Mr. David Leung
Mr. Pang Lau
Ms. Denise Leung
Mrs. Melissa Lauras
Ms. Janet Levenson
Ms. Heather Lautman
Ms. Tamara Levenson
Dr. Irving Lava
Mr. Jason Levin
Mr. Scott LaVance
Ms. Jodi Levin
Mr. Paul J. and
Mrs. Karen R. Lavelli
Ms. Toby Levin
Mr. Daniel Lavender
Ms. Susan Levine
Ms. Gemma Lavender
Mr. Glen and
Mrs. Amanda Levit
Mr. David S. Lavine
Ms. Sarah Levithan
Ms. Melissa Law
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Mrs. Mary Lalomia
Mr. Jordan Lawson
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Mr. Jason D. Lalor
Ms. Laura Lawson
Mr. Jason Lew
Mr. David LaMarche
Mr. Daniel Layfield
Ms. Cheryl Lewis
Mr. James G. and
Mrs. Kathryn M. Lamb
Mr. Don Lewis
Mr. Todd Kopstein
The Leaderman-Bray
Family
Ms. Margaret Korcynski
Mr. Ron Lamontagne
Ms. Allison Lebed
Ms. Judy Korner
Ms. Erica Lancaster
Mr. Michael Leder
Ms. Patricia Kosinski
Land Design
Associates Inc.
Ms. Elizabeth Lee
Mrs. Heidi Lee
Mr. Troy and
Mrs. April Lewis
Mr. Christopher Lane
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Ms. Alison Li
Mr. Jeremy and
Mrs. Meghan Lane
Mr. James and
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Dr. Whitney Lane
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Ms. Barbara Leflore
Miss Rafaella L. Kopelan
Mr. Taylor Kopelan
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Mr. Zoran Kozomara
Kraft Foods Group, Inc.
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Mrs. Tina Kraus
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Mrs. Kristen Krenzer
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Mrs. Nicola Lewis
Ms. Susan Lewis
Mr. Daniel Lieberman
Ms. Carol Liebman
Ms. Jennifer Lien
Mr. Jonathan and
Mrs. Molly Light
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35
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36
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37
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38
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Mr. Martin
Sivorinovsky
Mrs. Valerie Smith
Mr. Hartley Springman
Mr. John and
Mrs. Renate Seel
Mrs. Patricia Shippee
Mrs. Vera Smith
Ms. Megan St Clair
Mr. Peter Shire
Dr. Jay Sklar
Ms. Donna Snyder
Mrs. Jodi Stacey
Ms. Raquel Segaraa
Ms. Stephanie Shirilan
Ms. Lauren Skudalski
Ms. Jenny Snyder
Ms. Raychel Staley
Ms. Kimberly Sellers
Mr. Paul Shirk
Ms. Laurie Slackman
Ms. Jessica Snyder
Mr. Ron Snyder
Mr. Barry A. and
Mrs. Jane E. Stamm
Ms. Jennifer Sober
Dr. Evan Stampler
Ms. Sonia Socolov
Ms. Donna Standish
Mr. David Sokol
Mr. Steve and
Mrs. Kelli Staples
Ms. Szilvia Schranz
Mr. Mark Schroeder
Mr. Vincent and
Mrs. Elizabeth
M. Sganga
Mr. Justin Schultz
Mr. Anthony Sgherza
Mrs. Elizabeth Schreiber
Ms. Rachele Schulze
Mrs. Lisa Shaddock
The Timothy &
Angie Schurter Family
Mrs. Ellen R. Shalett
Ms. Lowina Sham
Ms. Lauren G. Schwartz
Ms. Josephine Shanafelt
Mrs. Stacy Schwartz
Frazier
Mr. Andy Sharp
Mr. Brandon Schwarz
Mrs. Jocelyn Schwarz
Mrs. Tina Schweid
Mr. George Schwinn
Ms. Anna Scipioni
Mr. Steven Scipioni
Mr. Edward and
Mrs. Theresa Scott
Ms. Jennifer Sharpe
Dr. Tim Sheahan
The Simon/Rosen
Family
Ms. Laurel Skarbinski
Ms. Lisa M. Skelley
Mr. John Selman
Mr. Tony Shockley
Mr. Gifford Slater
Mrs. Dana Selmer
Mr. Ron Slick
Mrs. Jenny Selvers
Mr. Brett and
Mrs. Jennifer Sholder
Dr. Justin Sempsrott
Ms. Keretha C. Shore
Ms. Catherine Senghas
Mrs. Linda Short
Dr. Richard E. Senghas
Ms. Robyn Shoulson
Mr. William H. and
Mrs. Bonita Smart
Mr. Greg and
Mrs. Rochelle Senholzi
Shreveport Medical
Society Alliance
Ms. Bonnie Smid
Ms. Aubrey Solomon
Mrs. Alli Smith
Mr. Patrick Solomon
Ms. Terri Slone
Ms. Jennifer Small
Mrs. Jeannie Sokolich
Mr. Brad Solecitto
Mr. Ryan Spahr
Ms. Katherine Spengler
Ms. Beth Sperber
Ms. Virginia Spewak
Ms. Gretchen Stares
Mr. Richard Stark
Mr. Bradley Starr
39
Ms. Dinny Starr
Ms. Sarah Stocker
Ms. Ellie Swanson
Mr. Steven Teich
Mr. Jason Starr
Mr. Robert Stockley
Ms. Cheyane Swarbrick
Ms. Jody Teicher
Mrs. Nicole Tiller
& Family
Ms. Sandy Starr
Mr. Charles and
Mrs. Sarah Stocks
Mr. Chris Sweeny
Ms. Beth Teitelman
Ms. Elizabeth Timmons
The Will & Kathy
Sweeny Family
Ms. Barbara Teleha
Ms. Kathleen Timothy
Mr. Douglas V. and
Mrs. Janice M.
Templeton
Mrs. Gwen Tiner
Ms. Julie Starr-Duker
Mrs. Shannon Staten
Mr. Mike and
Mrs. Becky Staton
Mr. Michael Stechler
Mr. Gary Steele
Mr. Matthew Stolzar
Mr. Mike and
Mrs. Annette Stout
Ms. Nancy Stout
Ms. Mary Sweet
Ms. Terra Sweet
Mr. Wesley Sweet
Ms. Holly Swersky
Mrs. Emily Strand
Mr. Kevin and
Mrs. Jamie Swider
Ms. Carlene Steenekamp
Mr. Mickey and
Mrs. Shana Strasser
Mr. Sean Swidler
Mr. Kurt Stegman
Ms. Rose Straub
Ms. Kimberly Stein
Mr. Lloyd and
Mrs. Thelma L. Swihart
Mrs. Anne Streule
Mrs. Allyson Steinberg
Mrs. JoElla Steele
Mr. Payton and
Mrs. Ashley Templeton
Ms. Elizabeth Tencza
Ms. Fatima Tiwana
Mr. Ronald H. and
Mrs. Doris Tobben
Mr. Alan and
Ms. Janis Todd
Mr. Shane and
Mrs. Stephanie Termer
Ms. Amy Todd
Ms. Kristin Terry
Mr. Paolo Tolusso
Mr. J. Ted Tomak
Ms. Alison Swindle
Mrs. Linda Strickland
Mr. Henry and
Mrs. Catherine
C. Terwedow
Mr. Lawrence Steinberg
Mrs. Karen Symond
Mrs. Kelli Tesh
Mrs. Ingrid Tonelli
Mr. Adam Striffler
Mrs. Lisa Steiner
Mr. Kevin Szczech
Ms. Heather Theado
Mrs. Diane Tornese
Mr. Christopher Strom
Mr. Charlie Steinhice
Ms. Katherine
Szostkowski
Mr. Gregory G. and
Mrs. Julie A. Thiess
Mr. Jimmie Torregrosa
Mrs. Rachel Stuart
Mr. Johannes and
Mrs. Elizabeth
M. Sten
Ms. Kristin Tice
Studeman
Mr. Michael Tabrizi
Ms. Jarmee Thieu
Mrs. Vilma Torres
Mr. Antonio Tafoya
Mr. Bryan and
Mrs. Kimberly Sturkey
Ms. Tausha Thiret
Ms. Lisa Towery
Ms. Yolanda Tafoya
Mr. Kyle Thistle
Mr. Raymond Town
Mr. Sina Taherkhani
Ms. Emily Thomas
Ms. Suzanne M. Townes
Ms. Janelle Talaasen
Mr. Gary Thomas
Ms. Delinda Tamagni
Ms. Heather Thomas
Mr. Kyle and
Mrs. Becca Townsend
Mr. Zhuo Tan
Mr. Herb Thomas
Mrs. Tracy Townsend
Mr. Carl Tarabelli
Ms. Tamara Steele
Mr. Scott and
Mrs. Jennifer
Stentz-Loeffelholz
Mrs. Abigail Sturley
Ms. Jennifer K. Stephens
Mr. Stephen Sturley
Mr. Norice B. Stephens
and Ms. Tanya M.
Griszell-Stephens
Ms. Kristine Suapengco
Ms. Gina Suarez
Ms. Mindy Tofias
Mrs. Ellen Tomassi
Mr. Ruben Torres
Ms. Kathy V. Thomas
Ms. Elizabeth Tracy
Ms. Debi Tarowsky
Ms. Kelsey Thomas
Mr. Khanh Tran
Mrs. Rachel Subido
Mrs. Amy Tarr & Family
Mrs. Sara Thomas
Mr. Quang Tran
Ms. Aviva Sufian
Mr. Jack W. Tarver
Ms. Susan Thomas
Travelers Foundation
Ms. Amanda Sugino
Ms. Kermisha Tate
Mr. Dave Thomassen
Ms. Deborah Travis
Ms. Kerri Sulcov
Ms. Alyssa Tattersall
Mr. Steven Sullivan
Mr. Edward and
Mrs. Diane Thompson
Mrs. Jamie Tretola
Ms. Ashley Tattersall
Ms. Eleanor Sulston
Ms. Laureen Tattersall
Mrs. Jennifer Thompson
Trinity Lutheran Church
Mrs. Claudia
Summers-Green
Ms. Carol Ann Tavis
Ms. Kim Thompson
Mr. Jed Taxel
Ms. Kristine Thompson
Ms. Kay Triplette
& Family
Mrs. Shannon
Sura Hajewski
Mr. Mark Taxel
Ms. Lynda Thompson
Ms. Kelly Trivett
Mr. Matt Thompson
Mrs. Genesa Trogdon
Mr. Russell Stewart
Mr. Scott and
Mrs. Elizabeth Susman
Mrs. Amy Taylor
Mrs. Ariel Taylor
Mr. and Mrs. Stephen
Thomson
Ms. Catherine Troup
Mrs. Ruth Stewart
Ms. Susan Sussman
The Andrew &
Charlotte Stillman
Family
Mr. Carl and
Mrs. Ramona
M. Sutton
Dr. Jennifer Stillman
Mr. Rockne Stephens
Mr. Charles B. and
Mrs. Linda C.
Stephenson
Ms. Michelle Sterling
Mrs. Lana Sternberg
Mr. Cooper Stetson
Dr. Rebecca
Stetson Werner
Ms. Alana Stevens
Ms. Lynn Stevenson
Ms. Sara Steward
40
Mr. Michael and
Mrs. Tanya Stokes
Miss Anushka
Subakeesan
Mrs. Cathy Taylor
Ms. Caroline Trimble
Mr. Michael L. and
Mrs. Debra C. Troxell
Ms. Dana Taylor
Mr. Richard and
Mrs. Deborah
E. Thurman
Ms. Grace Taylor
Mrs. Bridget Tidwell
Mrs. Kathy Sutyak
Ms. Gabrielle Tazza
Ms. Judy George Tieh
The Joshua Stillman &
Inna Postolov Family
Mr. Robert and
Mrs. Betty J. Suydam
Mr. Joseph Tazza
Mrs. Patricia Tierney
Ms. Trish Stillman
Ms. Brenda Svetlik
Ms. Ashley Teague
Mr. Harvey Tilch
Mr. Wayne and
Mrs. Barbara Tsutsumi
Mr. Frances Stocker
Mr. Floyd and
Mrs. Kathy Swann
Mr. Bruce and
Mrs. Rici Tegarden
Ms. Margie Tilch
Mrs. Pamela Tubbs
Mrs. Jaimi Tiller
Ms. Frances Tubens
Ms. Cheryl Taylor
Ms. Lauren Troxler
Ms. Karen Troy
Ms. Hanna Trundley
Ms. Agnes Tsang
Mrs. Joanne Tuckman
Dr. William Walsh
Mrs. Londa Wertman
Ms. Krystal Wesley
Mr. Brent and
Mrs. Lorie Winkler
Ms. Mary Ann Viscusi
Ms. Karen
Walsh-Rullman
Ms. Carol West
Mrs. Grace Winn
Mrs. Maria Turcoliveri
Mr. Roy Viskupic
Ms. Lindsey Walter
Mrs. Felisa West
Mr. Kenneth Winters
Ms. Andrea Turner
Dr. Judith Vitelli
Mr. James M. Walters
Mr. Marc Turof
Vito & Sons Ltd.
Mr. Gregory and
Mrs. Jane Wirth
Mr. Andrew and
Mrs. Virginia J.
Turowski
Ms. Amy Vogel
Mr. Jeff and
Mrs. Ann Walters
Mr. James A. and
Mrs. Susan S. West
Mrs. Erika Vogel
Ms. Brandi Walton
Mr. Jeffrey and
Mrs. Michelle West
Ms. Carolyn Volpe
Ms. Audrey Wang
Ms. Clare Westwood
Mr. Rick and
Mrs. Roberta
T. Withrow
Mrs. Kae Volpintesta
Ms. Wei-Li Wang
Mrs. Alison Wetzel
Mr. Varnell and
Mrs. Anne Voss
Mrs. Angela Ward
Ms. Mary Wevodau
Ms. Anna Ward
Ms. Susan Whelan
Mrs. Rebecca
Wojewoda
Mr. Matthew Waddell
Mrs. Cynthia Ward
Ms. Jill Whitaker
Ms. Agata Woldan
Mr. Scott Waddell
Mrs. Nancy Ward
Alex White
Ms. Janine Wolfe
Ms. Sandra Wadkins
Mr. Allen B. and
Mrs. Penny B. Warren
Ms. Elaine White
Ms. Lauren White
Mr. Jon and
Mrs. Amanda Wolfe
Mr. Don and
Mrs. Christine Wagner
Ms. Betty Warren
Ms. Morgan White
Ms. Laura Wolff
Mrs. Tobey Warren
Ms. Michelle Whiteaker
Ms. Lynn Wolff
Mr. Jim Wagner
Mr. Michael Washington
Ms. Jill Whitmore
Ms. Jodi Wolkind
Ms. Joan Waters
Mrs. Yuliana Valdes
Mr. Robert and
Mrs. Linda Wahlen
Mr. Paul J. Whitney
Ms. Linda Woo
Mrs. Shannon Valentine
Ms. Heidi Waibel
Mr. Heath and
Mrs. Katherine Watkin
Mr. Thomas Whittington
Ms. Leya Wood
Ms. Katrin van Dam
Mr. Gilbert K. Wald and
Ms. Shealagh
M. Gannon
Mr. Gregory Wickham
Mrs. Amy Woods
Mr. Jeff and
Mrs. Jonia Widener
Mrs. Lisa Woods
Ms. Lauren Wiener
Ms. Linda Wright
Ms. Cher Wigley Fisher
Mrs. Murielle Wright
Mr. John Wildt
Ms. Jane B. Wyatt
Mr. Richard Wiley
Mrs. McCartney Wilkins
Mr. and Mrs. Steve
Wygant
Mr. Ormsby Wilkins
Ms. Neila Wyman
Mr. Joseph and
Mrs. Eileen Wilkinson
Ms. Celia Wyndham
Mr. James A. Webster
Ms. Jessica Wechsler
Ms. Allison Williams
Mr. R.J. Wynn
Mr. Pat Weddle
Mr. Gerry Williams
Mrs. Bernadette Xenakis
Mr. Jeff Wegrzyn
Mrs. Karen Williams
Mr. Brennan Yanacio
Mr. James Weimer
Ms. Laura Williams
Ms. Dalit Yarden
Mrs. Susan Weinberg
Ms. Sara Williams
Ms. Laura Yeo
Mr. Gregg Weinlein
Mr. Sam Williams
Mr. Albert Young
Ms. Brenda Wallick
Ms. Sarah Weintraub
Mr. Joe Williford
Ms. Christine Young
Ms. Barbara Wallitt
Ms. Marcia Weiser
Mr. Jon Williford
Mr. John Young
Ms. Laura Walrath
Mr. Kenneth Weissman
Mrs. Stacey Willis
Ms. Selina Yeung
Ms. Caitlin Walsh
Ms. Sophia Weissmann
Ms. Charlotte Wilson
Mr. Nick Youngstrom
Ms. Kathy Walsh
Ms. Shirley Wells
Mrs. LuAnn Wilson
Ms. Sara Younts
Ms. Megan Wilson
Mrs. Carol Vida
Mr. Michael E. and
Mrs. Marcia E. Walsh
Mr. Mark Welton
Ms. Alexa Yow
Mrs. Brandy Wentworth
Ms. Salli Windham
Ms. Jeannine Vigerust
Mr. Johnnie Yu
Mr. Mike Walsh
Ms. Carol Winer
Mrs. Sasha Vilajeti
Ms. Stacy Walsh
Mr. Michael A. and
Mrs. Angela L. Werth
Mr. Michael and
Mrs. Carol Yurmanovich
Ms. Etta E. Tugman
Mrs. Andrea
Villanueva-Nordschow
Ms. Jessica Turco
Ms. Sarah Tutty
Mr. Grant Tyman
Mr. Michel Udell
Ms. Lorraine M.
Ullenberg
Upstate
Orthopedics, LLP
Ms. Cami Upfold
Ms. Karen Uphoff
Urban Inspirationco
Ms. Sandra Vadas
Mrs. Cynthia Van Ess
Ms. Kathryn van
Voorhees
Mr. Richard Waggoner
Ms. Lynn Walder
Ms. Kitsy Vane
Ms. Cheryl Waldorf
Mr. Austin Varga
Mr. Hugh Walker
Ms. Christine Varley
Mr. Jason Walker
Mrs. Luigua Varuzza
Mrs. Nichole Walker
Ms. Alicia Vasilow
Ms. Savannah Walker
Miss Anna Vasylenko
Mr. Adam Wall
Ms. Vickie M. Vaughn
Ms. Amanda Wall
Ms. Mayra Vega
Ms. Amy Wall
Mrs. Irene Velente
Ms. Jackie Wall
Ms. Gail Velez
Ms. Kelly Wall
Mrs. Joanne Venette
Mrs. Colleen Wallace
Mr. Louis Venezia
Mr. Francis X.
Wallenfang
Ms. Diane Ventre
Verizon
Mr. Matthew Vermeulen
Ms. Anne Veron
Ms. Kim Vich
Ms. Josh Vickers
Ms. Dasia Watson
Mr. Dennis Watson
Ms. Kaila Watson
Mrs. Penny Watson
Dr. Richard Watson
Mrs. Vickie Watson
Ms. Rebecca Weaver
Ms. May Webb
Ms. Erin Webster
Ms. Linda Winfree
Ms. Patty Woehler
Ms. June Wohlhorn
Jamie Wright
Mrs. Mandy Wynn
41
Ms. Michelle Zabka
Beyond the Sea
Ms. Laura Zadoff
Mr. James Zagunis
Blue Ribbon
Restaurants
Ms. Tracey Zaidi
The Bronx Zoo
Ms. Emily Zalacca
Ms. Amy Zaremba
Mrs. Jacqueline
Zavoli-Nitsche
Peter Thomas Roth
Clinical Skin Care
The Islanders
Mrs. Leslie Rader
Jai Mala Rose
The Rangers
Brooklyn Botanical
Gardens
Mr. Woody and
Mrs. Kathy Jay
Red Farm
Brooklyn Bowl
Jet Blue
Ms. Ann Reynolds
Ms. Kathleen Brown
Joe Leone’s Italian
Specialties
The Rock Club
Josée Bienvenu
Gallery
Ms. Ilsa Romero
Ms. Erin Zboray
The Capitol Theater
Ms. Mary Zecchino
Carnegie Hall
Ms. Lillian Zeidenstein
Cheesecake Factory
The Zelwin Family
Chelsea Piers
Connecticut
Ms. Yevgenia
Zemlyakova
The Karpel Group
KCI
Chelsea Piers NYC
Ms. Jennifer Konigsberg
Mr. Shuyan Zhu
Ms. Judy Ciccio
Mr. Robbie Zibilski
Coloplast
The Late Show
with David Letterman
Mr. Mark R. and
Mrs. Virginia Ziegenfuss
ConvaTec
Mr. Peter Zimmerman
Mr. Peter and
Mrs. Wendy Corbin
Relax Bedding
The Rodon Group
Dr. Robert and
Mrs. Laura Ryan
Sandpiper Optics
Scripps Network
Serendipity Magazine
L’Escale Restaurant
Shire Pharmaceuticals
LIFE, The Place To Be
SoulCycle
Linda Joy Creations
Stampin’ Up
CT Tennis Open
Ms. Ellen Liu
Ms. Jane Stanton
Mr. Richard and
Mrs. Deborah Zito
Ms. Karen Cunningham
Loews Corporation
Ms. Michelle Starkey
Ms. Michele Zontine
Loews Hotels
Steve Madden
Mr. Ron Zori
The Daily Show
with Jon Stewart
Luxottica Retail
Mrs. Dana Zucha
David Zwirner Gallery
Ms. Jasminka Zuljevic
Ms. Beth Davis
Luxury Hotels
International
Studio 14 Indoor
Cycling + Yoga
Doral Arrowwood
MAC Cosmetics
Tory Burch LLC
Mr. Josh Zuniga
Ms. Corinne Zupko
Mr. Ken Dorros
Ms. Kathy Marshall
Mrs. Mary Zurlo
Eileen Corbin
Interior Designs
McKesson Patient Care
Solutions Inc.
Zack Troop’s EB Fund GiveForward
Estela Restaurant
Meridian Health
USTA, US Open
Exhale MindBodySpa
The Modern Restaurant
UV Skinz
Experience
The Ride NYC
Mohegan Sun
Ms. Ines Vazquez
Mölnlycke Health Care
WABC-TV
The Four Seasons
Restaurant
Ms. Julieann Morabito
Warren Tricomi Salon
Moxie & Pixie Boutique
West Side Tennis Club
GAIAM Living
MTV Networks
Yoga with Fern LLC
Gastronomia Culinaria
Ms. Janet Murray
Yogibo
Gateway Art & Framing
Museum of Modern Art
Ms. Frederick Yorke
Ms. Ellenann Gatza
National Football
League
Weil, Gotshal &
Manges LLP
Mr. Michael and
Mrs. Sharon Glick
New World Stages
Youthful 8 Milania
Hair Collection
Gotham Comedy Club
Mr. Vic Nichols
Ms. Rachael Grimm
Nintendo
Ms. Jennifer Harbuck
Mr. Bill Noey
Hollister Wound Care
Ms. Colleen Holzman
One If By Land, Two If
By Sea Restaurant
Hugg-A-Planet
Ms. Valerie Overton
Ms. Yalli Zussman
Gifts In-Kind
Ms. Sonda Adkins
Alex and Ani
American Museum
of Natural History
Amy’s Bread
Andover
Angel’s Envy
Anonymous
Arbonne Anti-Aging
Skincare
Asics America
Corporation
B.B. King Blues Club
Barryville Management
Corporation
Beachbum Tanning &
Airbrush Salon
42
Introducing
Wellness LLC
The Glass House
New York Knicks
Patrick’s Fine Art
Supercuts
Two Boots Pizza
Mr. Scott Zant
Board & Staff
Board of Directors
Scientific Advisory Board
Richard Gallagher, Chair
SAB EXECUTIVE COMMITTEE
BASIC SCIENCE SUBGROUP
Jouni Uitto, Chair
Dennis Roop, Chair
Angela Christiano, Co-Chair
Mei Chen
Amy Paller, Clinical Vice Chair
Angela Christiano
Dennis Roop, Basic Science
Vice Chair
Jeffrey Davidson
John McGrath, International
Vice Chair
Jakub Tolar
Eugene Bauer, Corporate
Partnership Vice Chair
David Woodley
Andrew Tavani, Vice Chair
J. Alec Alexander, Treasurer
Daniel Siegel, M.D., Secretary
Leslie Rader, Chair Emeritus
Kathleen Brown
Angela Christiano, Ph.D.
William Cornman
Peter Marinkovich
Jouni Uitto
Faith Daniels
Thomas Gillespie
CLINICAL SUBGROUP
INTERNATIONAL SUBGROUP
Frank Kacmarsky
Amy Paller, Chair
John McGrath, Chair
John Lee
Alan Arbuckle
Alain Hovnanian
Anna Bruckner
Marcel Jonkman
Kenneth Goldschneider
Anna Martinez
John Jefferies
Jemma Mellerio
Moise Levy
Julio Salas
Anne Lucky
Katsuto Tamai
Robert Meirowitz, M.D.
Thomas Misisco
Robert Rayl
Robert Ryan, Ph.D.
Jeanne Rohm
Karen Moody
Jouni Uitto, M.D., Ph.D.
Kim Morel
James Wetrich
Neil Prose
Sonya Wilander
Elena Pope
Mark Popenhagen
SENIOR CONSULTANTS
Jo-David Fine
Gerald Lazarus
Alan Moshell
Lawrence Schachner
Tor Schwayder
Daniel Siegel
Timothy Wright
43
Young Leadership Committee
Staff
Cary Bell
Brett Kopelan
Executive Director
Emily & Charlie Belmonte
Carolyn Buntic
Peter Clarke
Andrew Conrad
Yanne Doucet
Suz Grossman
Lori Guilbeau
Samantha Hayden
Afshan Hussain
Brooke Josefs
Kelly McCauley
Ella McGorry
Jess Miller
Karen Modzelewski
Ruth Richebacher
Desiree Swendsen
Gabrielle Tazza
Nicholas Ruiz
Jonathan VanWettering
Linda Velazquez
Fran Williams
44
Karen Bjornsti
Manager, Events
Casey Fitzpatrick
Director, Events & Communications
Rita Garson
Director, Finance
Debra Henri
Associate, Finance
Meghan Jay
Director, Development
Jason Kelly
Manager, Database
Geri Kelly, R.N., BSN
EB Nurse Educator
Aigerim Saparova
Assistant, Development
Gabrielle Sedor
Manager, Programs
debra of America
information:
Programs and Services
email: woundcare@debra.org
visit: debra.org/Programs
Hosted Events
email: events@debra.org
visit: debra.org/HostedEvents
Local Events
email: events@debra.org
visit: debra.org/PlanLocalEvent
Ways to Give
email: donations@debra.org
visit: www.debra.org/Donate
45
debra of America
75 Broad Street, Suite 300, New York, NY 10004
debra.org (855) CURE-4-EB

Annual Report 2014

Transcription

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