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 2 | Spring 2014 The Bernie Mac Newsletter 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