Sarcoidosis Awareness Health Fair 2015

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Message from the
President
Spotlight on
Sarcoidosis
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10
Awareness
Health Fair
Grant Funded
by BMF
BMF
The Bernie Mac Foundation
2015 Spring/Summer Newsletter
Sarcoidosis
Awareness
Health Fair 2015
This was a monumental health fair,
mainly because there have not
been any major health
fairs on Sarcoidosis Awareness.
Bernie Mac Foundation
150 N. Michigan Avenue, Suite 2800
Chicago, Illinois 60601
www.berniemacfoundation.org
This is how we beat Sarcoidosis, Together!
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 everywhere-particularly
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,
Finally warm weather is upon us. As we are
celebrating spring, I want our supporters to know
as President & CEO that we yet remain steadfast
with our vision and mission for the foundation.
I know first hand the devastation of Sarcoidosis,
due to my first hand knowledge and the experience
of losing my husband to this disease. Through
my encounters and conversations with many of
you, I know that there are struggles with finding
appropriate patient care, obtaining medical and
life insurance, securing caretakers for patients,
enduring financial hardships and experiencing loss
of employment.
As a result of all these challenges I have
mentioned, I want you all to keep HOPE ALIVE!!!
In addition, I want you to know that The Bernie
Mac Foundation is collaboratively working with
Dr. Nadera Sweiss, The Bernie Mac Star Center
and the multidisciplinary team at the University
Of Illinois Hospital & Health Sciences System to
provide excellent patient care and medical research
to find a cure to end this devastating disease.
We were very proud to host our first annual
Sarcoidosis Awareness Health Fair on Wednesday
April 29, 2015. This event allowed the foundation
to have a platform to raise awareness about
Sarcoidosis. We were very pleased that the event
was well attended by supporters throughout the
Chicago land area. Patients provided very heartfelt
testimonies about living with Sarcoidosis. The
health fair allowed us an opportunity to provide
information to the community who knew very
little about the disease. We would like to thank
Marcia Cutright (BSN, RN, LMT) for providing
chair and hand massages to health fair attendees.
We also thank Cigna Health Spring for providing
wonderful goodie bag gifts. Special thanks to all
for supporting this event and making it a success.
To end we look forward to the many planned
events, which will further continue our
mission for 2015. Stay connected to the
Bernie Mac Foundation through our website
(www.berniemacfoundation.org) Facebook and
Twitter to find information regarding our upcoming
Fall event, The Bernie Mac Foundation REACH
For The Stars Town Hall Meeting, 2015.
I wish each and everyone a healthy and
happy summer!
Rhonda R. McCullough
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Spotlight on
Sarcoidosis
Cheryl Bordenave, BSN
I wanted to take this time out to thank you and
update you. It was nearly three years ago when the
Bernie Mac Foundation came into our lives, it was
also the same time I had been accepted into Emory
University to pursue a nursing degree. Through
this journey you have been a constant and resilient
force that have provided guidance, support, and
encouragement as I battled the rigors of academia
and the illness of my husband’s sarcoidosis. There
were many unbearable days and nights filled with
both frustration and uncertainty; uncertainty if I had
the courage and tenacity to achieve my academic
goals and effectively care for my husband.
Now it gives me great pleasure to announce, that I
was conferred my Bachelor of Science Degree in
Nursing from the top-ten ranked nursing school in
the nation. As you recall, Nijel became very ill my
first semester and I had received a subpar grade in
Pathophysiology, which caused me to have to repeat
the course; sitting out one year to subsequently
repeating the course in earning a B. Yet, despite this
obstacle the Bernie Mac Foundation consistently
encouraged me to persevere.
Despite hours of lectures, clinical rotations, care
plans, papers, family obligations and attending
to Nijel’s doctor’s appointments, ensuring his
medication adherence, as well as the emotional
toll that the disease has on him, we are celebrating
my dream. Unfortunately, at his last doctor’s
appointment, we were advised his lungs have
progressively worsen over the past four years and
he’s been referred for further testing in preparation
for a double lung transplant. We are confident that
the double lung transplant will greatly improve his
quality of life but we are duly aware that next
chapter of our life (post transplant) will encompass
life-long immunosuppression drugs and dutiful
prayer that his body will not reject the organs.
Despite our current reality, we joyfully celebrated
my graduation.
I was HONORED to celebrate with my husband all
of my graduation activities, for without his love,
devotion and support, none of my dreams would
had been possible. My husband and best friend
proudly accompanied to all my activities. As my
hands were “blessed” he looked on with pride;
together we toasted the traditional Coke toast; hand
and hand we “crossed-over” during the candlelight
vigil as I walked from being a student of Emory
University to an alumni of Emory University,
where my fellow alumni awaited us. During my
Pinning Ceremony, it was his resounding “I love
you” that resonated throughout the auditorium
and as I walked across the stage to graduate, he
enthusiastically cheered me on. What a fantastic
ending to my academic journey and I was elated to
share it with Nijel.
Accolades are often not given to organizations, but
I personally applaud you and give you a standing
ovation. I recognize the Bernie Mac Foundation for
your support and encouragement in motivating me
not to lose focus, ultimately assisting me in making
my dreams becoming a reality. We pride ourselves
in saying, Not Just A Nurse, An Emory Nurse.
Bernie Mac said, Who You With? This Emory
Nurse is with the Bernie Mac Foundation for Life!
Thanks for all that you do!
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Spotlight on
Sarcoidosis
Roderick James
I first notice skin sores on my scalp along with
shortness of breath 10 years ago. I went to my
Primary Care Physician and then I was given a
referral for the Dermatology Specialty Clinic.
Doctor took a biopsy of my scalp, had chest X-ray
and blood work. I was diagnosed with sarcoidosis.
Then I had to have a cat scan to make sure if it
was in my lungs. The cat scan confirmed that
sarcoidosis spread to my lungs. I was prescribed
Fluocinonide cream for my skin sores on my
scalp. Then I was referred to the Pulmonary Clinic
and I had breathing test. I was told my lungs are
not using full capacity. The Albuterol and Qvar
Inhalers dosage was increased. I have fatigue and
pain when walking. I have good days and bad days.
Awareness
Health Fair
Dr. Nadera Sweiss
On behalf of the University of IL Hospital & Health
Sciences System, we would like to thank the Bernie Mac
Foundation for organizing the Sarcoidosis Awareness
Health Fair.
In celebration of the sarcoidosis awareness month we
renew our commitment and dedication to serve sarcoidosis
patients all over the world.
We thank all the patients for their trust and support. Our
theme for 2015 is healthy eating, exercise and positive
attitude. Together we will make a difference, sarcoidosis is
a treatable disease.
I’ve been doing pretty good lately. I’m not going
to let it get me down. I’m still working and I hope
to keep working for the next 5 to 10 years. I keep
on keeping on. I known Bernie and Rhonda from
school. I’m writing this letter to raise awareness of
sarcoidosis. There is no cure for sarcoidosis. I hope
a cure is found! Who You WIT!
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The Bernie Mac Foundation
Sarcoidosis Awareness
Health Fair 2015
Denise Jordan Walker, Director of Marketing/ Community Relations
The 2015 BMF Sarcoidosis Awareness Health Fair
was a wonderful SUCCESS! Our health fair took place
on Wednesday, April 29th 2015 at UI Health, in their
beautiful lobby. This was a monumental health fair,
mainly because there have not been any major health
fairs on Sarcoidosis Awareness. This is a disease with no
direct medications authorized for treatment and with no
cure. So doing a health fair of this sort, you have to be
creative, and that was our approach.
We provided information on ways to manage sarcoid
symptoms, using nutrition and other means. The
information we provided through our research, received
an overwhelming and exciting response from attendees.
Many took extra copies of our information to pass out
at their church or other locations. We were very excited
to be able to connect those just diagnosed, with one
of the country’s leading doctors Dr. Nadera Sweiss.
Dr. Sweiss is known internationally for both treating
Sarcoid patients and for her diligent research for a cure.
Dr. Sweiss is the Director of our Bernie Mac STAR
(Sarcoidosis Translational Advanced Research) Center
located at UI Health.
Patients, and families attended this year’s Health fair
from all across Chicago and it’s suburban areas. The main
focus of attendees was Knowledge. They were looking
to learn more about this disease called Sarcoidosis. All
in attendance, wanted to become aware of the different
options for coping and possibly healing into remission.
Everyone who attended
received a relaxing and
complimentary chair
massage or hand massage.
Of course that was a big hit!
I’m looking with great
anticipation to our 2016
BMF Sarcoidosis Awareness
health fair. The ideas are
already circulating in my
head. Until next time…
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Sarcoidosis Awareness
Health Fair 2015
Douglas T. Gaines, Bernie Mac Foundation Board Member
I participated in the Bernie Mac Foundation
Sarcoidosis Awareness Health Fair on Wednesday
April 29, 2015.
It was a wonderful event! The show of supporters
attending this event was amazing and surprising. It
was truly a great experience.
I am encouraging board members to continue to
participate in community events, as it is valuable
time well spent. As a board member, it is an
opportunity to learn so much in such a short
period of time just being on-site and speaking
to various supporters, who are living with the
challenges faced with having Sarcoidosis.
I arrived a little early to help set up. In assisting
with the set-up, I was able to learn additional
information regarding Sarcoidosis (dieting, types,
etc.) and information regarding the Bernie Mac
STAR (Sarcoidosis Translational Advanced
Research Center Clinic). I was able to meet
University of Illinois Hospital and Health Science
Systems staff who helped paved the way for BMF
to host this event.
I learned the various ways Sarcoidosis can affect
individuals and how those individuals cope and
manage the process. I encouraged attendees to
view our website on a continuous basis. I also
invited supporters and attendees to participate
and continue to attend future events such as our
annual Bernie Mac Foundation Town Hall and the
Respiratory Health Association Hike For Lung
Health Walkathon.
One of my most enjoyable times was the
interaction with the patients as well as walkins whom were seeking additional information
for themselves or family members that has
Sarcoidosis. I spent time talking with the BMF
Star Clinic staff and Dr. Sweiss, brainstorming
on future events, as well as BMF positioning at
the University of Illinois Hospital and Health
Science Systems. Many of the visitors wanted to
meet Dr. Sweiss and her staff to obtain additional
information regarding the BMF Star Clinic and
future events. Many of the attendees were happy
to receive handouts and resources that were on
display providing information as it relates to diet
recommendations for Sarcoidosis patients.
I am encouraging board
members to continue to
participate in community events,
as it is valuable time well spent.
While attending the health fair, I texted a business
associate about where I was and what I was
doing. She just happens to be attending an event
in the neighborhood. She stopped by with her
mom. This associate, Tonya Mack, Legal Shield
Representative decided to attend our health fair.
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I engaged in a conversation regarding my role as
a BMF Board Member. In that same conversation
discussing the BMF and the Star Clinic, Tonya
disclosed that she had been diagnosed with
Sarcoidosis. My, my, my...I was overwhelmed.
She then expressed an interest in learning more
about what is being done in terms of research for
Sarcoidosis. She agreed to stay in touch with BMF,
connect with our website and to participate in
future events. Often times, discussions regarding
Sarcoidosis, will often lead you in connecting
with persons who have been diagnosed with
Sarcoidosis.
I hope this recap inspires someone to march on
to see what the end is going to be!!
Douglas Gaines
Gaines & Gaines Financial Services, Ltd. &
Hicks Global Enterprises
150 North Michigan Avenue,
Suite 2800
Chicago, Illinois 60601-7553
(312) 291-4465 Office
(312) 277-7673 Fax
[email protected] (E-Mail)
www.gainesandgainesfinancial.com
(Website)
www.solomonhicksfinancial.com
(Business Partner Website)
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Grant Funded by
Bernie Mac Foundation
Emma Carroll, Founder/Executive Director, JSOF
Ms. Emma Carroll’s foundation, JSOF was the recent
recipient of a grant funded by BMF. Here is her letter of
appreciation.
Dear Rhonda and the Bernie Mac Foundation staff,
JSOF - Janine’s Sarcoidosis Outreach Foundation
sincerely thank you for providing a grant to JSOF to
produce Sarcoidosis Awareness informational/educational
Brochures. These brochures are provided to patients
and others with credible and concise information about
Sarcoidosis and it’s health issues at no cost.
Again we thank you and share mutual support for the
BMF outreach programs and initiatives for Sarcoidosis
Awareness, Education and Research into a cause and
possible cure.
Save the Date
Hike for Lung Health
September 20, 2015
Bernie Mac Foundation
Town Hall Meeting
October 2015
Follow us on
Facebook and Twitter
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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
Dennis J. Irvin,
Community President,
United Fidelity Bank
Douglas T. Gaines,
Founder and CEO, Gaines
& Gaines Financial
Services Ltd.
The Laugh
Manotti L. Jenkins,
Principal and Owner, Law
Offices of Manotti L.
Jenkins, LTD
Milton E. Moses,
Founder and Owner,
Insurance
ClinicCommunity
Center, INC
COUNSEL
I would like to give these kids a
good home.In fact,there’s one a
ADMINISTRATIVE STAFF
few miles away from here...
Charles K. Snowden,
General Counsel
Mary Ann Grossett,
Executive Director, Newsletter Editor
Maximillienne Elliott,
Assistant General Counsel
Denise Jordan-Walker,
Director of Media Relations
Charoni H. Smith,
Director of Budget
Yvonne Moore,
Administrative Assistant.
Newsletter Co Editor
Cheryl Heissler,
Newsletter Graphic Designer
The Bernie Mac Foundation, Inc. is an authorized charitable organization under the Internal Revenue Code 501(c)3