Spotlight on Sarcoidosis REACH for the STARS President`s Message

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11
Welcome New
Board Members
Hike for Lung
Health 2014
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14
State of Illinois Health Fair
Sarcoidosis Awareness Event
Letter to the
Foundation
BMF
The Bernie Mac Foundation
2015 Newsletter
President’s
Message
Rhonda R. McCullough
Spotlight on
Sarcoidosis
Princess Currence story
R.E.A.C.H. for
the STARS
3rd annual Town Hall Meeting
at the University of Illinois
Hospital & Health
Sciences System
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TH E B E R N I E M A C F O U N D ATI O N N E W S L ET TE R
Bernie Mac Foundation
150 N. Michigan Avenue, Suite 2800
Chicago, Illinois 60601
www.berniemacfoundation.org
Our Mission
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.
Our Vision
Our vision is to become a beacon of hope to Sarcoidosis patients everywhereparticularly to those who do not have access to care. It is our hope that through raising
funds toward extensive medical research, we will be a part of the puzzle that gets one
step closer to solving the mystery that is Sarcoidosis, so that Sarcoidosis patients can be
treated with the same urgency and care as Cancer or HIV patients, and so that a cure is
found so that no one else has to suffer or lose their life to Sarcoidosis as Bernie did.
Our Values
Guided by the McCullough family’s charitable spirit and with the help of our friendships
and partnerships throughout the community, The Bernie Mac Foundation is dedicated
to continuing Bernie’s legacy of humility, charity, and sympathy by promoting scientific
research and awareness.
We are aggressively working toward the prevention and treatment of Sarcoidois, focusing
on the disadvantaged, who would otherwise not have access to resources.
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A Message from
the President
Greetings,
I am pleased to share all of our new experiences that
have taken place since our last news letter. Before I start,
I would be remiss by not thanking an extending a warm
heartfelt appreciation to all of the Bernie Mac Foundation
many continued supporters, officers, board of directors
and staff.
With that being said I’d like to welcome our New Board
of Director Members, Hon. Anthony L. Young (retired),
Dennis Irvin, Douglas T. Gaines, Manotti L. Jenkins, and
Milton Moses. We look forward to a wonderful working
experience with our new directors.
On September 24, 2014 we hosted the Bernie Mac
Foundation presents Sarcoidosis Awareness Day at
the State of Illinois Building. We raised awareness for
Sarcoidosis to the community. Dr. Nadera Sweiss was on
the panel to provide information on Sarcoidosis and to
answer questions about the disease. We were honored to
have our friend Secretary of State Jesse White, who is a
longtime supporter of the Bernie Mac Foundation.
On September 25, 2014, The Bernie Mac Foundation
and University of Illinois Hospital and Health Sciences
System presented, Shining a Light on Sarcoidosis, our
3rd annual Town Hall Reach For The Stars Event. Dr.
George Kondos, Vice Chair for Clinical Affairs, provided
welcoming remarks to the town hall attendees.
We were honored to have Pat Tomasulo, sports anchor
and co-host for WGN morning news host our event.
Also we were inspired by three fantastic women who
are living with Sarcoidosis. They provided their personal
testimonies. We thank Princess Currence, Arlette Grubbe,
and Melissa Johnson.
Dr. Nadera Sweiss and her team of doctors provided
information on the treatment of Sarcoidosis as well as
research updates. Dr. Shiva Shahrara provided pertinent
information concerning cardiac Sarcoidosis. Dr. Yang
Lu spoke on advances and imaging the heart and lungs
in Sarcoidosis. Dr. Mehdi Mirsaeidi received the Bernie
Mac Star Center Outstanding Research Fellow Award.
His research focuses on metabolomics in Sarcoidosis.
September 28, 2014 we participated in the Respiratory
Health Association Hike for Lung Health event held in
Lincoln Park. This event is always so rewarding. It allows
us firsthand to partner with other organizations for a
common goal, which is to bring attention to lung related
diseases. There is always great camaraderie among the
participants.
To end, we look forward to the many planned activities
and event which will further continue our mission for
2015. We thank you, our supporters, for your lasting
support.
I wish each and everyone a blessed Thanksgiving, a
joyful, healthy holiday season, and a prosperous
New Year!!!!
Rhonda R. McCullough
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Welcome New
Bernie Mac Foundation
Board Members
I am an attorney and new member of the Board of Directors of the Bernie Mac Foundation.
As a Board member, I am among a very dynamic group of professionals who set policy and direction for the Bernie
Mac Foundation. I am also a member of the Executive Committee for the Board, charged, along with three other
committee members, with streamlining and recommending important executive functions for the Board. Further, I am
the chair of the Communications and Media Relations Committee, charged primarily with protecting and enhancing the
Foundation’s brand.
My experiences with the Foundation have been very enlightening
and moving. Enlightening in the sense that I, like many people in
the general public, had been largely ignorant on what sarcoidosis
was. As a member of the Board, I have participated in programs,
such as our Town Hall Meeting in September 2014, that provided
very thorough clinical and practical patient information about
sarcoidosis. Moreover, I have been given direct personal access to
Ms. Rhonda McCullough, our President, CEO, and Board Chair,
as well as Bernie Mac’s widow, and she has spoken directly with
me about the symptoms and the human effects of living with, and
being married to, a sarcoidosis patient.
The experience has likewise been moving for me, in that my spirit
is filled daily with the reality of knowing that I am among a group
that is involved in productive activities to educate the public on,
and find a cure for, the devastating disease. I am further moved
by the fact that, since publicizing my membership on the Board, I
have learned that there are several family members and friends of
mine who are suffering from the disease, and I feel good to be a
part of the solution to relieve such persons of their suffering.
Law Offices of Manotti L. Jenkins, LTD.
5111 South University Avenue
Suite 305
Chicago, Illinois 60615
(312) 208-9537 (office/cell)
(872) 228-8153 (fax)
mj@mljlawoffices.com
www.mljlawoffices.com
My great experiences on the Board have truly encouraged me
about the future of the Foundation. This present Board and
the incredible staff of committed professionals are inspired to
strengthen the Foundation to continue to do extraordinary things
to educate the public and provide strong support for research to
find a cure for sarcoidosis.
“ALWAYS Fighting For Right!”
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Honorable Anthony L. Young
Currently Honorable Anthony L. Young (Ret.) is Chairman of the Board of Trustees
at Chicago State University. Judge Young practiced law with an emphasis in domestic
relations and tax appeals. He has served as a consultant to President Bobbie L. Steele,
Cook County Board of Commissioners, providing legal analysis and advice as requested.
As a Circuit Court of Cook County Judge, Anthony L. Young has presided over cases
from filing through trial, hearing motions to dismiss for temporary injunction for
summary judgments and motions regarding discovery. He has also heard actions for
accounting, declaratory judgment, interpleadings, partitions to quiet title, demands for
specific performance, and administrative review.
The Honorable Anthony L. Young is a proud alum from Golden State University, San
Francisco, California and DePaul University College of Law, Chicago, Illinois.
Douglas T. Gaines
Douglas is a sales professional from Chicago, working as a broker with large
conglomerate companies such as Allianz Life Insurance Company of North America, The
Lincoln FinancialGroup and The Prudential Insurance Company of America,subsidiary
of Prudential Financial, Inc. Douglas Gaines is the Founder and CEO of Gaines &
Gaines Financial Services, Ltd. He has partnered with his mentor and business partner
Sol Hicks, CEO of Solomon Hicks Financial Services of Acworth, Georgia who
mentored him to the Top of the Table of the Million Dollar Round Table. Mr. Gaines is
appointed with approximately 30 insurance companies in 25 states.
Milton Moses
Milton Moses, president and chief executive officer of Community Insurance Center,
Inc. in Chicago, Ill., has been re-elected to the board of directors of the Professional
Independent Insurance Agents of Illinois (PIIAI) as Region 18 Director, effective
October 1, 2002- September 30, 2003.
As Regional Director, Moses is the principal link between the membership in his region
and the PIIAI.As a member of the PIIAI board of directors, Moses works with other
board members to approve all policy positions regarding insurance legislation and,
through the board, assists with management decisions impacting the association’s longterm financial viability.
Moses currently serves on the Government Affairs Committee for the Independent
Insurance Agents & Brokers of America.
Dennis Irvin
President Highland Community Bank
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Spotlight on
Sarcoidosis
Princess Currence
I was diagnosed with Sarcoidosis 12 years ago.
This is my story. It was the summer of 2002,
June. I was going into my second year of graduate
school. I was a professional Congolese dancer
as well. I had been having intermittent bouts of
pain over the past few years and I thought it had
resolved, however, I woke up one morning with
achiness in my right ankle. I dismissed it thinking
that it must be because I worked it too hard in
dance practice the previous week. By the next
week, the pain progressed from my right ankle to
the left and then moved from my right wrist to my
left. By the end of two weeks, I could not push
myself up from a seated position with my hands.
The pain migrated from head to toe.
I went through a revolving door of doctors that
did not know what was wrong. The only remedy,
in their view, was to keep giving me pain killers.
I did not want more drugs, I wanted answers. Fast
forward, one of my students whose mother had
a similar mysterious condition, was diagnosed
with Fibromyalgia. Hearing this, I spoke to my
Rheumatologist about this possibility, did the test,
and low and behold, I was diagnosed with it as
well. I thought “finally! I have a solution”. But, this
elation was short-lived. The pain persisted; by this
time, I was walking with a cane. The turning point
came for me when one morning I woke up and
thought my house was on fire because the room
seemed to be in a haze. My eyes were inflamed and
I had Uveitis and Irisitis. It was the eye doctor that
first introduced the word Sarcoidosis to me and
thought I had something systemic.
It wasn’t until December, when I started to have
itchiness inside of my chest, accompanied by
a persistent cough, that my Rheumatologist
was alarmed, and fit me in to her schedule. She
immediately sent me to the hospital where after
a one week of battery of tests, I was diagnosed
with Sarcoidosis of the lungs primarily as well
as my joints. I had spent about 6 months dealing
with the unknown. They put me on high doses
of Prednisone; I was bed bound for a month and
needed to start back to school in January. Although
plagued with constant fatigue and pain, I was able
to return to school with a lot of faith and support.
It had taken me two years to taper down on the
20 mg prednisone a day along with trying other
drugs available at that time and ultimately settling
for Prednisone. My husband started researching
different things for the pain. There was some
research which suggested that people with
automimmune diseases have difficulty absorbing
vitamins, so I started taking liquid vitamins and
various supplements, so that by April, my pain
was greatly reduced. During my taper off of
Prednisone, I went in to remission, which is now
called the Dormant stage of the disease, in 2004
(August).
We got pregnant in December of 2004. I had my
daughter Gabrielle in September of 2005. Three
years later, in 2008, the disease became active
in my sinus and nasal passages. In 2009, I had
surgery to remove the tissue that was blocking my
Living with Sarcoidosis means that
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I had to establish new normals for
me and for my loved ones.
tear ducts. This tissue had made me tear excessively in
one eye and eliminated my sense of taste. I have been in
the Active disease state since then and am now back on
Prednisone and Plaquenil.
About Feb 2011, my husband began researching the
connection between food and the ways in which we could
establish a better relationship with food, for our new
daughter’s sake. He ran across the Paleodiet. The Paleo
or Primal diet is where you eat like the cavemen did,
“fruit, vegetables, nuts, meat, no gluten, no or low sugar”.
Around this time, I was in significant pain, taking Vicodin
and Ultram but with little or no effect. By September of
that year, following the diet, I had lost almost 70 pounds
and had very little pain. This changed my life.
Living with Sarcoidosis means that I had to establish new
normals for me and for my loved ones. It means that I
can’t always go out with family and friends. Sometimes
I walk with a cane or can’t walk. I’ve had to manage my
own expectations as well as that of my loved ones. I had
to decide how I was going to respond to the disease. My
husband and I often say to my daughter when she says that
she is bored or that she is mad when something doesn’t go
her way: Happiness is a choice. It doesn’t mean that this
life is not difficult, frustrating and sometimes makes you
cry. It means that it is what it is. We can choose to give up
and get upset that we sometimes can’t do the things that
we want or we can decide to be happy and find happiness
in different ways.
There still aren’t a lot of treatment options and research
needs to be done about the disease. It is not as sexy
or mainstream as some other diseases. When Bernie
Mac passed away, he was able to elevate the profile of
Sarcoidois and create discussions about it. Because the
cause of the disease is unknown, it was imperative, in my
view, that I take control of my health and help my doctors
manage the disease.
For me, coordination and communication of specialists
has been key. Every person’s journey through to diagnosis
is different. Unfortunately, we have the difficulty to get
diagnosed and the journey of treatment in common. That
is it is why we need places like the Bernie Mac Star Clinic
where we have leaders in the field that are trying and
pairing established as well as new and innovative ways to
treat and hopefully one day find a cure for this disease.
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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 extend our sincere appreciation to the Bernie Mac
Foundation for their continued support to the UIC, Bernie
Mac STAR Center.
On September 25, 2014 we held our 3rd annual Town
Hall Meeting at the University of Illinois Hospital &
Health Sciences System to work together for a
common goal.
The Bernie Mac Foundation team members continued
dedication, hard work and commitment made our
partnership a success. 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”.
The Bernie Mac STAR Center continues to grow to serve
patients from all over the United States. We strive to
deliver personalized care to all sarcoidosis patients with a
special focus on those with refractory disease and health
disparities. We look forward to great work being done in
this effort.
Our collaborative efforts lead to a great 2014. We proudly
celebrated together the two year anniversary of the Bernie
Mac STAR Center, On September 25, 2014 as we held
our 3rd annual Town Hall Meeting at the University of
Illinois Hospital & Health Sciences System . We are
proud of the preliminary research finding supported
through the Bernie Mac Funds.
Dr. Shiva Shahrara received the Bernie Mac STAR Center
outstanding scientist award to study the mechanistic
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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. We appreciate your
commitment to raise $250,000 over
the next few years.
Dr. Nadera Sweiss
Dr. Shiva Shahrara
Your support and trust made it
possible for us to succeed and serve
many patients with sarcoidosis.
It will allow us to emphasize our
philosophy in sarcoidosis care
“REACH for the STARS” into
action.
Dr. Yang Lu
R: Research
E: Education
A: Academic excellence
C: Clinical Care
H: Humanism
Maximillienne Elliott, Esq.
aspects of cardiac sarcoidosis.
sarcoidosis in African American
Ten patients were included in the
patients. His preliminary data was
study, the cells are isolated from the
presented as an abstract at the
peripheral blood and sophisticated
AASOG meeting in Ohio, Sep 2014.
testing is done in Dr. Shahrara lab
He will continue his work mentored
to identify immunopathogenic
by Dr. Roberto Machado.
mechanisms in sarcoidosis. Our
results are preliminary and are not
Dr. Yang Lu joined our STAR team
published yet, we
to focus on studying
hope to complete
a novel imaging
this study in
protocol combining
We appreciate your
2015 with the
conventional nuclear
commitment to
leadership of Dr
cardiac stress test
William Swedler,
and chest FDG PET/
raise
$250,000
over
Steven Dudek
CT in patients with
and Dr George
the next few years. cardiac sarcoidosis.
Kondos.
Dr. Patricia Finn
Dr. Mehdi Mirsaeidi received
and Dr. David Perkins will lead
the Bernie Mac STAR Center
the STAR team discovery lab and
outstanding research fellow
will focus on studying the role of
award. His research focused on
microbiome in sarcoidosis. Our team
metabolomics in sarcoidosis, his
remains active at the national and
preliminary research identified
international level through research
novel biomarkers in fibrotic lung
and education.
We extend our thanks to all of your
team members individually. We
extend our thanks and appreciation
to all sarcoidosis patients. We are
dedicated to serve every patient with
sarcoidosis. We are excited about our
partnership and collaborative work,
together we will make a difference.
Host Pat Tomasulu WGN TV Anchor
Town Hall Metting photography courtesy of Donald Barge
Special thanks to:
Tanya Garrett, Sarita Garrett,
Danielle Haseman, Emily Welter,
and Saumil Patel, Dionne Thompson
and Brenda Joyce Thompson.
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Hike for Lung
Health 2014
The Hike for Lung Health is a multi-charity walk
hosted by Respiratory Health Association (RHA)
to promote healthy lungs and fight lung disease.
The Bernie Mac Foundation proudly participated for the fourth year.
Leading the way in donations was our President and CEO, Rhonda R,
McCullough, who ranked third in overall donations for this event with
$3,510.00. The Hike for Lung Health Charity Walk brought out the
youth and the young at heart. Persons either walked a mile, three miles,
virtually walked and/or enjoyed the festivities provided in part by the
Jesse White Tumblers, face
painters, DJ and bouncing
booth for the youth. The Bernie
Bernie Mac Foundation
Mac Foundation’s booth
consisted of donations from
raised in overall
another one of our partners,
donations $5,100.00
University of Illinois Hospital
Health and Sciences System.
We gave away snacks, T-shirts
and information on sarcoidosis.
A photo-op standee of Bernie
Mac was a crowd pleaser as
well as our custom made game
called “Knock Out Sarcoidosis”;
where persons punched a whole
(“knocked out sarcoidosis”) in
a circle and retrieved either a
gift and or information about
sarcoidosis and the Bernie Mac
Foundation. It was a great turn
out and a successful event. Our
administrative assistant, Yvonne
Moore served as our liaison for
the second year in.
“We are delighted to have Bernie Mac Foundation participating (Hike for
Lung Heath) and raising awareness about sarcoidosis.”
~ Gina M. Schwieger Sr. Director Special Events,
Respiratory Health Association
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Board of Directors, Assistant Legal Counsel, Executive Director, and Secretary of State Jessie White
State of Illinois Health Fair
Sarcoidosis Awareness Event
The Bernie Mac Foundation sponsored a State of Illinois Health Fair Sarcoidosis Awareness Event on September 24, 2014.
The event was held at the James R. Thompson Center, Concourse Level 100 West Randolph Street, Chicago, Illinois 60601.
The event featured health related topics promoting Sarcoidosis awareness and research. Rhonda R. McCullough,
President and CEO of the Bernie Mac Foundation welcomed special guests and attendees. Executive Director, Mary Ann
Grossett delivered information regarding the foundation’s vision and mission. Assistant General Counsel, Maximillienne
Elliot provided biographical information on the Founder and Chairman Emeritus, Bernard J. McCullough, Bernie Mac
Foundation. Additionally, the foundation was honored to have the support of our longtime friend and supporter, the
Honorable Jesse White, Illinois Secretary of State.
The Bernie Mac Foundation featured Dr. Nadera J. Sweiss, Program Director S.T.A.R. Clinic. The Bernie Mac Sarcoidosis
Translational Advanced Research (S.T.A.R.) Clinic Program Director, Dr. Sweiss and medical team, provided health
related issues regarding Sarcoidosis awareness, reducing health disparities among Sarcoidosis patients and patient advocacy
and care.
Denise Jordan Walker, Bernie Mac Foundation Director of Media and Public Relations facilitated this event.
The Bernie Mac Foundation would like to thank Ms. Wilma J. Wilbon, Special Events Coordinator and staff for their
support and assistance.
Rhonda R. McCullough
President/Ceo
Secretary of State Jesse White
w/ Attorney Edward A. Williams
(Board of Director/Treasurer)
Rhonda, Dr Nadera Sweiss
(Director of the Bernie Mac
S.T.A.R. Clinic) and supporters
Secretary of State Jesse White
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5th Annual
Holiday Toy Drive
The Bernie Mac Foundation held our 5th Annual Holiday
Toy Drive Event was sponsored by the Illinois Department
of Public Health Special Events at the James R. Thompson
Center. Our toy drive was a complete success. We are
grateful to our supporters that took time out of their busy
schedules to drop off toys, shake our hands, share memories
of Bernie Mac, browse our website, learned about sarcoidosis
and research that is being facilitated in part by the generous
donations to the Bernie Mac Foundation. We are grateful
for the generosity of our supporters. A special thank you
to Ms. Wilma J. Wilbon; Special Event Administrator and
staff, Marshall Grant, Thaddeus Brooks Sr. and Robin Riley.
The toys were donated to ReVive Center for Housing and
Healing. It is a trusted not-for-profit organization that is
committed to solving homelessness in Chicago.
We look forward to your support and participation for our
6th Annual Holiday Toy Drive Event in December 2015.
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Letter to the
Foundation
Melissa Johnson
I would like to thank the Bernie Mac Foundation for your
fine contribution to the S.T.A.R. clinic. Your financial
contribution will assist with research so that a cure for
sarcoidosis can be found. I appreciate and commend
Ms. Rhonda and her entire staff and Board of Directors
for being instrumental with informing the public about
sarcoidosis. Awareness is fundamental and a cure is very
much needed.
Sarcoidosis has affected and changed my life greatly.
The left side of my brain swelled and nearly blinded
me. Presently, I am experiencing debilitating joint pains
that prohibits me from working. Although these physical
conditions exist, it certainly does not hamper my drive
to be an advocate to other sarcoidosis patients. At the
Town Hall meeting, I was able to share my remedies for
reducing inflammation. Thanks to the research that is
being done at the Bernie Mac S.T. A. R. clinic, one day
soon, a cure for sarcoidosis can be found.
BOARD OF DIRECTORS
Bernard J. McCullough,
Founder and Chairman Emeritus
Rhonda R. McCullough,
President and Chief Executive Officer
Edward A. Williams,
Treasurer, Principal and Owner,
Edward A. Williams and Associate
Honorable Anthony L. Young,
(Ret.), Chairman, Chicago State
University Board of Trustees
Manotti L. Jenkins,
Principal and Owner, Law Offices of
Manotti L. Jenkins, LTD
Dennis Irvin,
President, Highland Community Bank
Milton E. Moses,
Founder and Owner, Community
Insurance Center, INC
Douglas T. Gaines, Founder and
CEO, Gaines & Gaines Financial
Services Ltd.
COUNSEL
ADMINISTRATIVE STAFF
Charles K. Snowden,
General Counsel
Mary Ann Grossett,
Executive Director, Newsletter Editor
Maximillienne Elliott,
Assistant General Counsel
Denise Jordan-Walker,
Director of Media Relations
Yvonne Moore,
Administrative Assistant,
Newsletter Co Editor
Cheryl Heissler,
Newsletter Graphic Designer
Charoni H. Smith,
Director of Budget
The Bernie Mac Foundation, Inc. is an authorized charitable organization under the Internal Revenue Code 501(c)3
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