Newsletter The Bernie Mac Foundation

The Bernie Mac Foundation
Newsletter
SPRING 2014
A Note from the President,
Rhonda R. McCullough
Greetings,
As we look back on another year gone
and moving forward into a New Year,
I would like to extend a warm and
heartfelt appreciation to the Bernie
Mac Foundation many supporters,
volunteers, officers, board of directors and staff.
I am pleased to be able to tell you about the year the
Bernie Mac Foundation had. On September 22, 2013
we participated in the Hike for Lung, we were able to
not only walk, but personally greet Sarcoidosis patients.
This experience was extremely rewarding, allowing us to
see firsthand the value of our work!
On October 3, 2013 the Bernie Mac Foundation held
our 2nd annual Town Hall Meeting at the University of
Illinois Hospital & Health Sciences System. We were
overwhelmed with gratitude for the many healthcare
professionals on hand who provided exceptional
knowledge and expertise.
I was also personally touched by the many patients,
families, friends and well wishers who came out. It
was an exhilarating and extremely informative day for
everyone involved and to see so many come together
for a common goal.
Culminating our activities for the year was our Bernie
Mac Foundation 4th annual Toy Drive, held at F.O.G.
Cosmetics in River Oaks Mall. We are extremely
appreciative to Tondalah Stroud and F.O.G. Cosmetics
for making this endeavor possible. We collected over
300 plus toys that we distributed to various children
and women shelters!!!!
It was a blessing to have so many donate and sacrifice
their time to gift wrap and deliver the many toys
collected.
This year the Bernie Mac Foundation is growing in
supporters and connecting to communities, this is
always part of our mission. Our vision when we first
started the foundation was to bring information and
hope to Sarcoidosis patients and their families. I am
pleased to share with you that we continue to achieve
this mission!!
On that note, we look forward to the many activities
and plans being made to continue our mission during
2014 and your continual support for us.
Sincerely, Rhonda R. McCullough
Our Mission
Bernie Mac Foundation
150 N. Michigan Avenue, Suite 2800
Chicago, Illinois 60601
www.berniemacfoundation.org
The Bernie Mac Foundation, Inc. is dedicated to preserving and continuing the
vision and legacy of its founder, Chairman Emeritus, Bernard J. McCullough, who
desired to use his celebrity status to promote awareness and research of the
disease known as Sarcoidosis, as well as to raise funds in an effort to bridge the
gap between the medical professionals who treat and the patients who suffer from
Sarcoidosis, thereby providing support to Sarcoidosis patients everywhere.
R.E.A.C.H. for the STARS Greetings from Nadera J Sweiss, MD on behalf of
the Bernie Mac UIC STAR team: I would like to
congratulate the Bernie Mac Foundation team members
for their dedication, hard work and commitment. We are
honored to work closely with you toward a common goal
“finding a cure for sarcoidosis and lessen the suffering of
those affected by this disease”.
Our team strives to deliver personalized care to all
sarcoidosis patients with a special focus on those with
refractory disease and health disparities. It does feel
rewarding to know that we will work together to find
a cure. We look forward to great work being done in
this effort. Without your tireless efforts we could not
have received the recognition of the Honorable Mayor
Rahm Emanuel in April 2013. We are very grateful and
appreciative for his recognition concerning the hard
work and dedication of the collaborative efforts of Bernie
Mac Foundation and University of Illinois Hospital and
Health Sciences System.
Our collaborative efforts lead to a great 2013. We
proudly celebrated together the one year anniversary
of the Bernie Mac STAR Center, in October 2013. It is
a great honor to receive the research support through
your foundation. We truly appreciate your trust and
commitment to support the STAR team at the University
of IL Hospital and Health Sciences System. Our team
was touched by the speeches made by the BMF team
members and the support groups nationwide. Your
support and trust is crucial for our mutual success to
serve patients with sarcoidosis. It will allow us to bring
our philosophy in sarcoidosis care “REACH for the
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STARS” into action.
R: Research
E: Education
A: Academic
excellence
C: Clinical Care
H: Humanism
We are confident that the efforts of the Bernie Mac
Foundation will be recognized worldwide through our
mutual work with World Association of Sarcoidosis
and Other Granulomatus Disorders (WASOG) and
American Association of Sarcoidosis and Other
Granulomatus Disorders (AASOG). I am honored to
have created the AASOG logo on behalf of the AASOG
team. Please note that the WASOG logo includes a
knight that is trying to kill the dragon. In the AASOG
logo, the dragon is killed. The arrow is going through his
mouth. The color of the AASOG letters is the sarcoid
color. The white horse and the specific dress of Saint
George were chosen for historic reasons. The killing is
done in an angelic kind way. The concept of “if you have
to kill, kill with kindness.”
We extend our thanks to all of your team members
individually. While we live in challenging times we
believe that when the right people come together,
difficulties become opportunities. We extend our thanks
and appreciation to all sarcoidosis patients. We are
dedicated to serve every patient with sarcoidosis. It is
our belief that “Only life lived in service is worth living”.
Nadera J Sweiss, MD
R.E.A.C.H. for the STARS Town Meeting
It was a blessing to be able to attend the REACH for the
STARS Town Hall Meeting celebrating the partnership
between the University of Illinois Hospital & Health
Sciences System and the Bernie Mac Foundation. The
topic of Sarcoidosis hits close to home due to my mother
being diagnosed with the disease back in the early 90’s.
It was a rough time back in those days; I can remember
her preparing my brother and me for her possible defeat
in her battle with the disease. The next five years were
filled with restless nights and days of uncertainty. Thank
God, those years are behind us; twenty years have passed
and my mother is healthy as ever. Due to the early
reactive care and the hard work of her physicians she
was able to win the battle; however the war still trudges
on. With the continued research efforts of physicians
and scientists, such as Dr. Nadera Sweiss of the Bernie
Mac STAR Clinic, we will find a way to turn the tides
of this fight and ultimately win the war. I applaud their
efforts. Without them, I may very well be without my
mother; and I encourage them to continue the fight.
I would like to thank you for inviting me and my family
to the Bernie Mac Town Hall meeting this past October.
It was great to see how many people attended the town
hall meeting and the support they have for the Bernie
Mac Foundation and the S.T.A.R. Clinic. My family
and I were inspired to see how many doctors and other
medical professionals that are currently involved in
trying to find better treatment and ways to diagnose
sarcoidosis. As a person that has been diagnosed with
sarcoidosis, including a family member and friends.
I know how important it is to all of us to find better
treatment options and ultimately a cure for sarcoidosis.
Lamar Barnes
I look forward to attending future town hall meetings
and to hear about the continued progress that is being
made. I would encourage anyone that has sarcoidosis
or want to know more about it to attend the town hall
meeting at the University of Illinois.
To be able to be participate in The Bernie Mac STAR
Center Town Hall Meeting was both educational and
enlightening. Meeting Dr. Sweiss and the other specialist
associated with the center and to hear of the research
being done there was very gratifying for a Sarcoidosis
patient. I look forward to attending the next town hall
meeting.
Rodney K. Reese
Founder/CEO
The Sarcoidosis Awareness Foundation of Louisiana, Inc.
3 | Spring 2014 The Bernie Mac Newsletter
I was honored to be a part of the town hall meeting
and I left feeling very encouraged by everything I had
heard that day. When I returned home, I shared this
information with others that have sarcoidosis.
I have attended previous sarcoidosis conferences
however this was the most informative meeting I have
attended.
Thank you again,
Karen M. White
Sarcoidosis Awareness of Northern California
Spotlight on Sarcoidosis
My journey to the “Spotlight
on Sarcoidosis” is a long and
winding path. My name is Wendy
McWhorter and I am a 43 year
old middle school teacher in Los
Angeles. I was born and raised
in the South Suburbs of Chicago
where my family still resides. I may
live in LA but Chicago will always
be home.
For most of my life I have had the
benefit of overall good health. I
loved my job, enjoyed being active
and having a social life. In the fall
of 2011, my health started a slow
decline with generic symptoms of
fatigue, night sweats, headaches
and the like. After consulting with
several urgent care doctors, I was
tired of being told to take a few
days off and rest. As time passed, I
knew something was not right; this
was not a bug that would subside
with rest and chicken noodle soup.
It took all the energy I had just
to make it through teaching my 6
classes. I started withdrawing from
my life and the people in it for
the sake of naps. Over a course of
months, my symptoms worsened.
The “me” I had come to know
was slowly disappearing into thin
air. The week between Christmas
and New Year’s 2011, I woke with
such excruciating abdominal pains
I could not find a comfortable
position. With this new very painful
symptom, I required more answers
than, “You’re just tired” and “Are
you exercising?”
4 | Spring 2014 The Bernie Mac Newsletter
And so the story begins… I sought
out a variety of doctors ranging
from a general physician to a
gastroenterologist to an oncologist
here on the West Coast who
administered tests ranging from
CTs to PET Scans to bone marrow
biopsies to help me with my
“mystery” illness. As I find now,
I was lucky because my team of
doctors (to whom I fondly refer
to as “Team McWhorter”) heard
me, didn’t dismiss my symptoms
and tried to help. Now, I know
many Sarc patients are not so
lucky. After months of poking
I remember one
of my doctors
saying, “It’s for sure
something is wrong;
we just don’t know
what it is.”
and prodding, we still didn’t have
any solid leads. I was so tired of
paper gowns, cold offices and what
I refer to as “vampires” taking
more and more tubes of my blood.
Because of random results in the
myriad of tests, there were at times
discussion of words like “Leukemia”
and “Lymphoma”. Lying awake
at night I would think, “Will my
brother donate his marrow, if I
need it?”“Will I have to get rid of
my cats?” “Who will
take care of me when I am sick?”
These and many other thoughts
bounced around in my mind
during the hours when I should
have been fast asleep. I remember
one of my doctors saying, “It’s for
sure something is wrong; we just
don’t know what it is.” That was
not comforting. Understand I am a
solution oriented person: I need a
name, something to research. I was
coined a “zebra”. I learned, medical
interns are told, “When you hear
hoof beats, think of horses not
zebras” meaning when diagnosing
patients, think common illnesses
not illnesses rarely diagnosed, you
know, like Sarcoidosis. Being called
a medical “zebra” was not helpful,
I wanted to get a reasonable answer
not be a medical anomaly. This
label was frustrating and moreover
it was scary for my entire family
and close friends. Every phone call
home was left with more questions
than answers. Although my illness
did not appear to be contagious,
the frustration and looming fear
certainly was.
Eventually “Team McWhorter”
decided upon exploratory surgery
to investigate what was causing
my pain. I woke to my surgeon
reporting that everything went
Spotlight on Sarcoidosis (cont…)
well, great to hear, but the next
bit of her message was not so
reassuring… They needed to open
my abdomen because what they
found, they had never seen. Excuse
me? I have something growing in
me that this medical team has never
seen? After the initial shock of that
statement, the reality set in that I
was closer to an answer. Even as
the apprehension grew about the
possible diagnosis, whatever was
growing inside of me was now on
its way to four different labs to be
analyzed and I would be getting the
answer…soon.
Weeks of recovery later, one
lab report mentioned the words
“granulomas consistent with
Sarcoidosis”. That was all I
needed, or so I thought. Since the
“granulomas” were found in my
lymph nodes, most doctors in Los
I came across
the Bernie Mac
Foundation
Website and has
proved to be the life
line I needed.
Angeles said they were unable
to see me and would only be of
assistance if the disease presented
itself in my lungs. As I later found,
most doctors are not taught much
about Sarcoidosis. In fact, a family
5 | Spring 2014 The Bernie Mac Newsletter
friend told me medical textbooks
spend less than a page about this
multi-system disease. Finally, I did
find a doctor but he couldn’t see
me for more than 6 months. That
was not going to be an acceptable
course and just added another
challenge when I thought I had
turned a corner.
It was now month 11 since the first
symptoms began, and through my
vast internet searching, I came
across the Bernie Mac Foundation
Website. It has proved to be the
life line I needed. I read on the site
about Dr. Nadera Sweiss and her
work with Sarcoid patients and that
soon there would be a clinic at the
University of Illinois, Chicago. It
was my ah-ha moment…Clearly, I
knew I had to see this physician,
at this hospital, in this city. She
was the doctor that would be able
to help me, give me a definitive
diagnosis, and guide me through
managing the disease. This was no
coincidence that the Bernie Mac
STAR Clinic was in my hometown
where the core of my support
system resides.
With my father’s encouragement, I
decided to fly home for a week and
see if I could get an appointment.
The staff at the clinic was more
than accommodating and squeezed
me in to be seen by Dr. Sweiss.
She and her staff were more than I
could have hoped. She was able to
give me the answers and guidance
for which I had been searching.
On October 2nd, my 41st birthday,
I was officially diagnosed with
Sarcoidosis. I later learned it is
called a “snowflake disease” because
every case is unique; thus the long
diagnosis process endured by so
many of us. That night my mother
and I hugged and cried for what
This was no
coincidence that the
Bernie Mac STAR
Clinic was in my
hometown where the
core of my support
system resides.
seemed like hours. My family and I
had been though a rough year and
we now knew the name of the game.
Currently, I fly from Los Angeles to
Chicago at least three times a year
depending on my status to see Dr.
Sweiss and the amazing team at the
Bernie Mac STAR Clinic.
For about a year and a half, we were
fortunate to find my Sarcoidosis
inactive. Life was falling back into
place. I was back to work, exercising
since my energy level was up and
even enjoying dating. On my last
visit in December, I learned that my
labs showed the disease trying to
become active again. I have learned
a lot about this disease and myself
over the last year. I cannot control
Christmas Gifts for Children of Stepping Stones
Early Childhood Learning Center
Dear Mary Ann:
On behalf of myself, the staff of Stepping Stones, and all of the underprivileged
children at our school, I extend heartfelt thanks. Because of your generosity,
those children who may not have been fortunate enough to receive anything for
Christmas will now have that opportunity.
There are no words to express my gratitude for the kindness you have shown.
Therefore, I could not in good conscience move forward without letting you
know how much your acts of kindness will profoundly affect the students who
will benefit from your generosity. The words ‘Thank You’ seem so insignificant
compared to what you have done, but when it comes from the heart, it means
a lot.
I wish you God’s speed and blessing for what you’ve done. And I thank you a
million times over on behalf of Stepping Stones, as well as the families you have
so graciously blessed. Your thoughtfulness will never be forgotten.
Dearest Rhonda:
I have sent a letter of thanks to your foundation for your extreme act of
kindness, but I had to write a personal thank you from my heart. I knew Mary
Ann had asked you to help our agency and she informed me that our center
would be a recipient of toys for kids this Christmas. She wanted to know how
many children I had and I told her. When she called that day, I was a little
upset, because a homeless single mother, with three stairstep children had not
been to school all week. When I contacted them, they informed me they did not
have boots to come to school in the snow. I immediately got their sizes and had
someone go and get boots and deliver them to the children. You did the same
thing! Mary Ann told me you told her “let’s go take care of this”. You sent 10
pairs of boots, a coat (which I gave to the same family), and enough toys to give
42 underprivileged children, who may not have had anything for Christmas,
not one, not two, but most of the children got three presents! I gave the three
girls another set of boots, and the rest of the boots were given to other family
members who had children in their families or their friend’s children that also
needed boots. Little did we know how bad the weather was going to get and
these people would really need these boots. Every parent that picked their child
up that day had a smile on their face when they left the center. Rhonda, I know
you do not know the impact you made on my families this holiday season.
THANK YOU!
When all is said and done, sister to sister, you showed up and showed out! I will
forever be thankful for your generous act of kindness.
Dr. Nelda Jones, Director
Stepping Stones Early Childhood Learning Center
6 | Spring 2014 The Bernie Mac Newsletter
Spotlight on Sarcoidosis (cont…)
everything, and sometimes just
need to hold on and let life steer
itself. I don’t know what is ahead
for me, or how I will go about
navigating the turns life with this
disease will throw at me but I do
know that I am a stronger person
for these last years. I may not be
able to control this disease, but
I am in control of how I let the
disease affect me and my life.
Every day is a new day and I try to
make the best of what each has to
offer me and what I, in turn, offer
the world around me. In reality,
this is much easier some days than
others, but I try.
I felt as though I was wandering
ill and aimlessly for over a year
and I want to thank the Bernie
Mac Foundation for helping me
turn the corner and, really, get
my life back in my own hands. I
cried on the day I was diagnosed,
not tears of sadness, but tears of
relief. I had answers and with the
on-going work of the Bernie Mac
Foundation, we will continue
to strive for more answers and
hopefully one day a cure for
Sarcoidosis. On a final note, there
is something more calming about
being a snowflake than a zebra.
Peace to all,
Wendy McWhorter
Bernie Mac Foundation Events
Bud Billiken Parade, Holiday Toy Drive
7 | Spring 2014 The Bernie Mac Newsletter
8 | Spring 2014 The Bernie Mac Newsletter
Hike for
Lung Health
$3,695.00
was raised by the The
Bernie Mac Foundation
56 participants in 2013
Hike for Lung Health.
Board of Directors and Administrative Team
Inspirational
Bernard J. McCullough, ~ Founder & Chair Emeritus
“I wanted to be the best that I
could be, first for myself, then for
an audience. I love to see a smile
on somebody’s face....If I can tell
someone a story that makes them
bend over and laugh, that’s bigger
than anything else.” — Bernie Mac
Rhonda R. McCullough ~ President
Edward A. Williams ~ Treasurer
Charoni H. Smith ~ Finance and Budget Director
Joseph D. Ament ~ Attorney and Legal Counsel
Mary Ann Grossett ~ Executive Director
The Laugh Clinic
Boy: Bernie rhymes with turkey.
Bernie Mac: No it doesn’t. And it’s
Mr. Mac. Rhymes with smack, as
in upside your head.
9 | Spring 2014 The Bernie Mac Newsletter
Denise Jordan Walker ~ Marketing Director
Yvonne Moore ~ Administrative Assistant
Cheryl Heissler ~ Graphic Designer
Donald Barge ~ Photographer