The Scleroderma Foundation Southern California Chapter Calendar Sclero Sun Winter 2009 February-March Standard Meeting Locations Antelope Valley Spanish Speakers Club Key to a Cure Gala 2008 2009 Calendar Panera Bread Se Habla Español With all the glitter and fanfare of a Hollywood movie See Locations list for all address 39403 10th Street West Chapter Offi ce opening night, the luminaries of the Southern and contact information Palmdale 93551 11704 Wilshire Blvd. Ste 250 California Chapter of the Scleroderma Foundation Contact Carole (661) 273-6952 Los Angeles 90025 and their very special guests came together to enjoy Visalia Contact Josephine the 12th Annual Key to a Cure Gala at the Manhattan Beach Marriott Resort. presents the No meetings scheduled Crescenta Valley Ofi cina Esclerodermia (877) 443-5755 12th Annual Scleroderma Foundation until further notice Contact Joan (626) 824-0921 The Chapter and the well known Southland resort, [email protected] Ventura County recent cohosts to the Scleroderma Foundation’s National Convention in July of this year, once again February 08 (Sunday) Camarillo Health Care District to a San Fernando Valley Orange County 3639 East Las Posas Rd. Ste 117 proved themselves up to the task of providing all Ke y in attendance with a memorable evening of music, 11 AM to 1:00 p.m. Fountain Valley Hospital Camarillo 93010 Saltzer Conference Room Contact Arline (805) 987-8236 dining, dancing, the auctioning of very special C u r e items, and most important, close camaraderie in 11170 Warner Ave. [email protected] GalaNovember 1, 2008 February 14 the service of our organization’s important fund Riverside County Fountain Valley 92708 raising goals. 10 AM to Noon Contact Bonnie D. (714) 839-7034 Visalia [email protected] Contact Lety (559) 734-1011 Highlighting the evening of entertainment was the *New Location amazing Wayne Foster Group . With this fi ne group of dancers and musicians creating a happy mood, February 28 Riverside County Westside the crowd proceeded to have the very best of times long into the night. New Facility for Dr. Al Franco, Chapter Offi ce Orange County The conversation soon reached a crescendo, with much of it directed to assessing the results Rheumatologist 11704 Wilshire Blvd. Ste 250 11 A.M. to 1:00 P.M. of another very successful year of Foundation activities, greeting friends from far and wide, and 11725 Slate Ave. Los Angeles 90025 buzzing over the many notable items to be auctioned, among them trips to exotic locales, sports March 07 Arthritis Center of Riverside Contact Josephine (310) 477-8225 memorabilia, and numerous novelties of interest. Riverside, CA 92505 (877) 443-5755 Ventura County Co-hosted this year by comedienne Kathy Buckley and Jesus Rangel, a very dedicated, long time 10 AM to Noon Phone (951) 352-1700 [email protected] supporter of the Scleroderma Foundation and it’s work, introductions were made of the evenings Contact Francene (951) 735-2724 honorees. Included were the recipients of this year’s Spirit of Hope Award, National Board member March 08 (Sunday) [email protected] Whittier/ San Gabriel Valley Kerry Hall, the Inspirational Spirit Award, Christina Burgher of UCLA, and the Janie S. Benner San Fernando Valley Whittier Presbyterian Memorial Spirit Award, given this year to Assemblywoman Sharon Runner of the 36th District of 11 AM to 1:00 P.M. San Fernando Valley Intercommunity Hospital California. Sherman Oaks Hospital 12401 E. Washington Blvd. Thanks to the sponsorship of Prosperitas, a peer based community for high net worth individuals, March 12 (Thursday) Doctors Conference Room Whittier 90602 the ongoing commitments of Anheuser Busch, Motorola and the Benner Family, as well as the hard Antelope Valley 4929 Van Nuys Blvd. Contact Norma (626) 369-2096 work and dedication of the Southern California Chapter and it‘s members, the evening once again 6:30 P.M. Sherman Oaks 91403 [email protected] proved to be a remarkable success, leaving all in attendance well fed and entertained, looking Contact Kelly (818) 974-2428 Myrna (562) 699-5080 forward to the coming new year with a renewed sense of purpose. March 14 [email protected] South Bay 10 A.M. to Noon South Bay Oral and Maxillofacial Surgery Offi ce Crescenta Valley 1812 Artesia Blvd. Call Joan Redondo Beach 90278 directions at Whittier/San Gabriel Valley http://omsurgery.com/offi ce1.html Call Norma Contact Valerie (310) 390-1717 (home) (310) 318-6970 (weekdays except weds.) [email protected] Scleroderma Foundation Tel: 310.477.8225 Southern California Chapter Fax: 310.477.8774 11704 Wilshire Boulevard, Suite 250 www.sclerodermasocal.org Los Angeles, CA 90025 [email protected] Summer 2008 The ScleroSun The ScleroSun Summer 2008 Cocoa Autoimmune Diseases Act From the Editor… Lowers Representative Patrick Kennedy (RI) introduced H.R. 7078, known as the Prevention, Awareness, and Hi Everybody! Research of Autoimmune Diseases Act of 2008, to Congress on September 25, 2008. Each year at this time the Sclero Sun puts Blood This bill would increase public awareness of and research on autoimmune diseases in order to help out our Winter edition which includes a Once again the Southern California Chapter of the Scleroderma Foundation was patients get diagnosed more quickly and receive proper treatment as soon as possible, as well as to little pitch for making a timely year end, looking for a full house in hosting the 2nd Annual All In For Scleroderma Texas Hold Pressure improve the quality of life for those already suffering from autoimmune diseases. fully tax deductible, donation before ‘Em Tournament and that’s just what happened. December 31 to further the aims and Happy justifi cation “This legislation is so important to persons with autoimmune diseases. Although these diseases have Sclero-Sun Editor Bob Rich Staged this year in Santa Monica, the much anticipated event, sponsored by the for chocolate a major impact on our society they are often left behind in both research funding and awareness,” said goals of our Southern California Chapter accounting fi rm of Guillen, Suede and Company and GSC Financial Investing, inspired loving patients with Virginia Ladd, who is president of American Autoimmune Related Diseases Association (AARDA). “We of the Scleroderma Foundation. card players of all skill levels to come out for a great evening of holding ‘em or folding Scleroderma! do not know what causes them nor do we know what role the environment plays in triggering them. This year is no different, except for the exciting news that, if you use the ‘em in support of the Chapter and Foundation, It turns out that blood We thank Representative Patrick Kennedy for introducing this important bill and hope it has full support accounting fi rm of H&R Block, they will donate $25 to the Scleroderma Enjoying drinks, hors d’oeuvres, cash prizes and raffl e items while raising money to pressure (BP) responds favorably of Congress.” Foundation for doing your taxes, a real boon for our cause. fi nd a cure for Scleroderma, the crowd was soon hard at work attempting to draw to cocoa, a new study suggests. Authors of the study say H.R. 7078 targets minority communities that may be underserved or disproportionately affected Using H&R Block’s altruism as an example, I’d like to make a personal great hands or bluff their way through the night, hoping to advance to the fi nal table that “products rich in cocoa may be considered part of a and especially targets women who are affected three times as often as men. It calls for research on appeal to everyone who reads this to take advantage of the Scleroderma and a chance at total victory. With cries of victory or groans of resignation and defeat, blood pressure lowering diet.” environmental triggers of autoimmune diseases, such as heavy metals, phthalates, and pharmaceuticals, Foundation’s Non-Profi t status and reduce your income taxes a little bit the action progressed long into the night. Lead investigator for the study, Dirk Taubert, MD, PhD, some of which are known to “trigger” the initiation of autoimmune disease in genetically predisposed more while doing something important that benefi ts all of the amazing, After many exhilarating hours of bidding for valuable items and betting on the cards says “I believe that cocoa is healthier than other sugar individuals. courageous people affl icted with and struggling against the diseases and was done and the last hand was dealt, the big winner of the evening turned out to confectionary or high-fat dairy products.” The bill also calls for grants for education of health care providers on potential links between autoimmune discomforts of Scleroderma. be the Chapter, after a very successful night of food and fun chipped in more than $12,000 for Scleroderma research, education and support. In the cocoa studies, consisting of consumption of diseases and cognitive and mood disorders, such as depression. A loan repayment program to qualifi ed While together we have done a typically fl avonol-rich chocolate in the range of 100 g physicians who agree to conduct three years of autoimmune disease research is also part of the bill. great job raising much needed per day, systolic BP (SBP) and diastolic BP (DBP) dropped According to the National Institutes of Health (NIH), 23.5 million Americans suffer from autoimmune money throughout the year with the signifi cantly in the active group as compared with control diseases and the prevalence of these diseases is rising. Collectively, autoimmune disease is one of the Stepping Out For A Cure Walk-a-thon, groups. top 10 leading causes of death in women under age 65 and represents at least $100 billion in annual the Key To A Cure Gala, and our All- Murphy’s Lesser direct health care costs. In For-Scleroderma Texas Hold ‘Em According to Taubert and colleagues, the effects of cocoa Poker Tournament, I was hoping to Known Laws on SBP and DBP were comparable to those achieved with convince all of our great supporters Courtesy of Elaine Furst antihypertensive drugs. Said Taubert, “the magnitude of to reach into their pockets one last the hypotensive effects of cocoa is clinically noteworthy; it time this year and make 2008 our 1. Light travels faster than sound. is in the range that is usually achieved with beta-blockers most outstanding annual fundraising Do You Know Your Family AQ? This is why some people appear or angiotensin-converting enzyme (ACE) inhibitors” experience ever! According to the National Institutes of Health, 23.5 million Americans suffer from autoimmune diseases bright until you hear them speak. Studies suggest that a reduction of 4 to 5 millimeters (ADs) in various forms, making them more prevalent than cancer, which affects 9 million people at any As you already know, whether of mercury in SBP and 2 to 3 millimeters of mercury in given time, and heart disease, which strikes 22 million. you’re a patient or a caregiver, we 2. He who laughs last, thinks slowest. DBP would be expected to substantially reduce the risk of Evidence suggests that ADs run in families, so it can be vital to know your Family AQ, or Autoimmune are quite literally in the fi ght of our 3. Change is inevitable, except from a vending machine. stroke by about 20%, coronary heart disease by 10%, and lives. Our hard earned dollars, not will donate all-cause mortality by 8%. Quotient, of close and distant relatives. To help, the American Autoimmune Related Diseases Association 4. Those who live by the sword, get shot by those who don’t. (AARDA) offers the following: easily parted with in these times $25 to the Dr. Taubert believes his study will foster new research in of economic uncertainty, not only 5. Nothing is foolproof to a suffi ciently talented fool. this fi eld. 1. Get educated. There are more than 80 known ADs and an additional 40 suspected ones. They include go to advance the Foundation’s Scleroderma multiple sclerosis, myasthenia gravis, scleroderma, polymyositis, vasculitis, lupus, Sjögren’s syndrome, Advocacy Programs, Doctoral 6. The 50-50-90 rule: Anytime you have a 50-50 chance of getting something Authors note: For those of us with Raynauds rheumatiod arthritis and Crohn’s disease, to name but a few. Autoimmunity--whereby the immune Fellowship Programs, to educating, right, there’s a 90% probability you’ll get it wrong. Phenomenon who are told to avoid chocolate because Foundation system mistakenly recognizes the body’s own proteins as foreign invaders and produces antibodies to researching and supporting our of its caffeine content, decaffeinated cocoa is readily 7. If you lined up all the cars in the world end to end, someone would be stupid attack healthy cells and tissues--is the underlying cause of these diseases. endeavors, but also to improving available online and can be ordered from specialty for doing enough to try to pass them, fi ve or six at a time, on a hill, in the fog. the many experiences our Chapter stores. 2. Be aware that autoimmune diseases tend to target women. Some estimates indicate that 75 percent of those affected are women in their childbearing years. is producing in order to enhance your taxes! 8. If the shoe fi ts, get another one just like it. Source: Heartwire the quality of our very existence. 3. Current research points to a genetic component. However, ADs are not typical genetic diseases, such 9. The things that come to those who wait will be the things left by those Our continuing contributions help who got there fi rst. as sickle cell anemia, where there is a specifi c gene mutation. With ADs, multiple genes are involved to carry on a tradition of caring for that collectively increase vulnerability or susceptibility. As a result, ADs tend to “cluster” in families-- others while we care for ourselves. 10. Give a man a fi sh and he will eat for a day. Teach a man to fi sh and he will not as one particular condition but as a general tendency to the process and, consequently, different sit in a boat all day, drinking beer. diseases. So that’s me throwing in my two cents! 11. Flashlight: A metal tube used to store dead batteries. 4. Do your own family medical history. Given the family connection, knowing the health histories of Or should I say, that’s me, along with H&R Block, throwing in another $25 other family members is critical. Once you know your family history, share it with your doctor. towards supporting an organization that is diligently working every day of 12. The shin bone is a device for fi nding furniture in a dark room. the year to support and comfort people who are coping with the many life 5. Keep a “symptoms” list. People with ADs often suffer from a number of symptoms that, on the challenging effects of Scleroderma. 13. A fi ne is a tax for doing wrong. A tax is a fi ne for doing well. surface, seem unrelated. It’s important, therefore, to list every major symptom you’ve experienced so 14. When you go into court, you are putting yourself in the hands of 12 people you can present it clearly to your doctor. Won’t you join me? who weren’t smart enough to get out of jury duty. 6. Recognize that getting an autoimmune disease diagnosis is often challenging. One of the factors that Bob Rich, makes getting a correct AD diagnosis so diffi cult is that symptoms can vary widely, notably from one Editor of the Sclero Sun disease to another but even within the same disease. Also, because ADs affect multiple systems, their symptoms can often be misleading. You can fi nd information and a complete AD list at www.aarda.org. It is a thousand times better to have common sense without education than to have education without common sense. -Robert Green Ingersoll If you can’t see the bright side of life, polish the dull side. -Anonymous Page 2 Winter 2009 The ScleroSun The ScleroSun Winter 2009 Page 3

Increased Fitness Study Shows Why the Flu Likes Winter Dartmouth Researchers Discover Gene Another Medical Myth Associated With Up Researchers think they have solved one of the great mysteries of the fl u, Signatures For Scleroderma Goes By The Wayside namely why the infection spreads primarily in the winter months. Distinct genetic profi les can discern different groups of patients with Now, this is a surprise! The advice we’ve been getting to 70% Reductions in As long as fl u has been recognized, people have asked, why winter? scleroderma, Dartmouth Medical School researchers report. Their most of our lives, to drink eight glasses of water a day, The very name, “infl uenza,” is an Italian word that some historians discovery of distinguishing molecular subtypes within the disease appears to have almost no medical backing. All-Cause Mortality proposed, originated in the mid-18th century as infl uenza di offers new insights and opens a window for better diagnosis and “We set out to take a look at the eight-by-eight maxim, One of the largest freddo, or “infl uence of the cold.” The answer, it seems, has to do targeted therapies. and we were really unable to fi nd any scientifi c studies ever to link with the virus itself. It is more stable and stays in the air longer rationale for it,” said University of Pennsylvania kidney exercise capacity to when air is cold and dry. Scleroderma is a chronic connective tissue disorder that can cause specialist Dr. Stanley Goldfarb, a lead researcher mortality risk should skin hardening and internal organ dysfunction and affects four times Flu season in northern latitudes is from November to March, the for a study recently published in the Journal of the motivate physicians to as many women as men. It ranges from mild, localized to the skin, to coldest, dryest months. In southern latitudes, it is from May until American Society of Nephrology, an organization of pay as much attention systemic and life threatening. to patients’ exercise September. In the tropics, there is no real fl u season at all, though kidney specialists. capacity as they do other disorders take their toll. Patient complications are variable and hard to predict, explains Dr. Michael Whitfi eld, who headed the Will water make you other major risk factors, There was no shortage of hypotheses. Some researchers said fl u came in winter research team. “We show that we can now divide patients even more fi nely than what is currently done feel full so that you’ll researchers say. because people are indoors or that children are in school, crowded together, getting the fl u and passing clinically, and fi nd a clear association between disease severity and gene expression. “ The results were eat less while dieting? Their study suggests that the adjusted risk of dying it on to their families. Others thought it was a diminished immune response because people make less published online in PLoS ONE, an open-access journal of the Public Library of Science. The doctors were was reduced by increasing exercise capacity. Those vitamin D or melatonin when days are shorter. Still others pointed to the direction of air currents in the upper “We show for the fi rst time that we can classify patients with a systemic autoimmune disease into different only able to fi nd two small studies looking with the greatest exercise capacity reduced their atmosphere. But many scientists were not convinced. “We know one of the largest factors is kids in school. groups by gene expression patterns alone,” says Whitfi eld. “Now that we have discovered these new into the matter, which mortality risk by as much as 70%. “For a little bit of Most of the major epidemics are traced to children,” said Dr. Jonathan McCullers, a fl u researcher at St. genetic molecular subsets, we can begin to map pathways to predict who will progress to different clinical disagreed with each investment you get a lot of return,” said lead author on Jude Children’s Research Hospital in Memphis. “But that still does not explain wintertime. We don’t see fl u endpoints.” The researchers hope to begin to understand which patients should be treated aggressively, for the study, Dr. Peter Kokkinos. other. in September and October.” As for the crowding argument, Dr. McCullers said, “That never made sense.” example, and which drugs benefi t which patients. The study appeared in an online edition of Circulation People work all year round and crowd into buses and planes no matter what the season. “We needed some Neither are there many studies to say that guzzling in January 2008. actual data,” Dr. McCullers added. “The studies by the Whitfi eld group are particularly noteworthy as they constitute the fi rst genetic water will prevent headaches or fl ush toxins from categorization of scleroderma,” says Dr. William Rigby, a rheumatolgist who treats scleroderma. “Since your body. “I always laugh when I hear that one,” Kokkinos and colleagues followed 15,660 people with But getting data was surprisingly diffi cult. After experimenting to no avail with typical laboratory mice, no one understands the basic processes that cause scleroderma, it has been largely categorized by the says Stella Volpe, a nutritionist at the University of and without evidence of cardiovascular (CV) disease researchers exposed guinea pigs, which are now rarely used in research, to many of the viruses that cause distribution of clinical fi ndings, such as the location of skin thickening (torso relative to the hands). These Pennsylvania School of Nursing. “Your kidneys do that who had completed an exercise treadmill test at the the fl u, noting that they soon got sick and spread it among themselves in a way that made them ideal new studies, utilizing objective measures, establish that distinct genetics account for the ways scleroderma job,” she said. Water facilitating toxin excretion was study outset. for study. By varying air temperature and humidity in their quarters, they discovered that transmission manifests itself and hold out the possibility for an improved ability to treat and induce remission of this not verifi ed by any sort of scientifi c study. Kokkinos reported that every increase in exercise was excellent at 40 degrees. It declined as the temperature rose until, by 86 degrees, the virus was not potentially fatal disease.” So why did these notions take hold? Goldfarb says capacity was associated with a reduction in mortality transmitted at all. They also observed that the virus was transmitted best at a low humidity rate of 20 they found numerous medical-advice sites on the that ranged from 12 to15 percent. Compared to people percent, and not transmitted at all when the humidity reached 80 percent. The researchers used DNA mircoarrays to measure gene expression and computational algorithms to in the lowest fi tness category, those in the highest select subsets of genes that can classify the different patients. The new technology offers an objective way Internet are full of recommendations to drink extra It turns out that cold air and low humidity helps virus particles remain airborne. That is because they fl oat exercise capacity had a 70% lower risk of all-cause to survey and analyze thousands of genes at a time and look at inherent genes in skin samples, which like water, perpetuating the fallacy in spite of the lack of around in little respiratory droplets made from simple breathing. When the air gets more humid, those clinical evidence. His conclusion? “It’s required for life, death. Even those in a moderate fi tness category had most cells, contain all the human genetic information. a 50% lower death rate than those with the lowest droplets pick up water, grow larger and fall to the ground, where the viruses become harmless. and I guess that’s led people to think, well, if a normal The results, according to Dr. Whitfi eld, help tie together basic and clinical science for scleroderma and could amount is good, then extra might be better,” he said. fi tness capacity. Researchers say the best strategy to avoid infection is an innoculation with the modern fl u shot made from potentially be used as an outcome measure in clinical trials. Studies are in progress, he adds, to help defi ne pieces of dead viruses that stimulate the immune system and infer immunity without passing on the active Doctors also caution that drinking so much water Kokkinos emphasized that the study extends responses for specifi c therapies and determine which drugs will work best for different patient profi les. fi ndings from other studies, done largely in higher form of infl uenza. may also be detrimental to those using medications socioeconomic classes, to lower socioeconomic to control problems such as high blood pressure and groups who may not always have access to the best, point out that excess water, though lacking calories, most expensive, medical care. does have weight. In fact, a gallon of water weighs approximately 9 pounds. If you drink “No one study has all the answers, but this study fi lls it in, you had best eliminate it in a lot of blanks,” Kokkinos said. “The major fi nding is completely or you will gain that for all sorts of people, as one increases exercise in girth! capacity based on an exercise treadmill test, there is an inverse drop in risks of all types.” The authors point out that treadmill tests are a standardized procedure used throughout the world. The study results underscore, once again, the importance and pay-off of regular exercise, and that those benefi ts may be particularly relevant in groups that cannot afford expensive medications, health club memberships, or even foods that would help improve their cardiovascular risk profi le. Daily walking, by contrast, is free. “People are people, and we all get caught up in the excuse, ‘I can’t exercise I don’t have time,’” Kokkinos commented. “But everyone needs to get involved because we are the most sedentary nation in the world. We need to get up, get motivated and do something about it.” People will occasionally stumble over the truth, but they usually manage to pick themselves up, walk over or around it, and carry on. For every mistake we must surely be learning. -Winston Churchill -George Harrison Page 4 Winter 2009 The ScleroSun The ScleroSun Winter 2009 Page 5

In Memory of… Apply Today For The Winter Anti-Cancer Drug Being Tested On In Memory of… Utilities Discounts! Scleroderma Patients Elaine Goren Hill ______As the weather turns colder here in the Southland, it becomes important Physicians at Northwestern Memorial Hospital are studying the effects of an anti-cancer drug to treat Roberta (Bobbe) Browning ______The Foundation has sadly received word of the passing to adjust ours thermostats to a level of comfort that suits the very special patients with scleroderma, a rare, incurable autoimmune rheumatic disease that leads to hardening Roberta Browning, Bobbe to all who knew her, has lost of Elaine Goren-Hill, known to our support groups as a needs of people with Auto-Immune disorders such as Scleroderma. and tightening of the skin and connective tissues. Scleroderma affects an estimated 300,000 people a long battle with the many effects of Scleroderma. vivacious spirit and dynamic speaker on the subject Due to the lobbying efforts of very determined patients and in the United States and can often attack the lungs, heart, kidneys and intestinal tract, and sometimes lead to death. A graduate of in Psychology at Bucknell University of nutrition and diet, due to complications associated lawmakers here in California, those who have a diagnosis can apply to their local gas and CSU Fullerton, she will be remembered for her with her battle against Scleroderma. and electrical utilities for the “Medical Baseline Discount.“ You are legally entitled to this service! The study is the fi rst of its kind to examine if Gleevec, a cancer drug commonly used to treat leukemia, fi ne contributions to education and counseling in the Elaine, a graduate of Frances Stern Nutrition Center at There are no other qualifying requirements. Income is not a factor. will treat the skin thickness in scleroderma patients by blocking the pathway that causes fi brosis. Southern California State University system before her the Tufts-New England Medical Center, and a clinician Patients enrolled in the clinical trial will receive daily oral doses of Gleevec for six months and will be retirement in 1997. In order to receive this valuable service, you just need to call your utilities and have them mail you a in the San Fernando Valley offi ce of her husband, Dr. evaluated initially on a weekly basis at Northwestern Memorial, one of only three centers nationwide simple form to complete. Once your Doctor fi lls out his portion, it is mailed back, takes a few weeks to Bobbe and her husband Lee made their home in the Gabriel Goren, a noted vascular surgeon, made herself participating in the study. Others include Johns Hopkins and Boston University Medical Center. process, and then the discount appears on your monthly statements. Fullerton area and were very active members of the available to the Foundation soon after discovering that John Varga, MD, rheumatologist at Northwestern Memorial, John and Nancy Hughes Distinguished Orange County support group and strong supporters Don’t delay, do it today! she had Diffuse Systemic Sclerosis, adopting the role Professor in Rheumatology at Northwestern University’s Feinberg School of Medicine and principal of the Chapter’s activities. In addition, she served her of both student and educator, helping herself and those investigator of the study, said this could be a big step forward for people diagnosed with scleroderma. community as a past board member of the Southern around her understand the disorder. “Based on recent research performed by investigators at the Feinberg School, Gleevec shows potential California YWCA. effi cacy in reducing the abnormal skin changes associated with scleroderma.” Her inquisitive personality, willing participation, Her bright spirit and passionate involvement will The exact cause of Scleroderma, a chronic disease most commonly found in women between the positive attitude and endearing friendship will be What’s That Smell? be sadly missed. The Chapter has received many ages of 30 and 40, remains unknown. Through continued research, Northwestern Memorial physicians sorely missed by all who had come to know her in her donations from friends and family in her honor to Garlic has long been touted as a health booster, hope to identify treatments to target the disease and improve the quality of life for patients living with various capacities. continue the fi ght against Scleroderma. but it’s never been clear why the herb might be Scleroderma. good for you. Now new research is beginning to “We hope that the use of Gleevec for a sustained period of time will decrease the symptoms of skin Bonnie Chung ______unlock the secrets of the odoriferous bulb. In a Joanne Marcus ______study published recently in the Proceedings of hardening, and potentially slow the progression of this devastating disease,” adds Dr. Varga. Sadly, Bonnie Chung, a very active member of the Relatives and friends of Joanne Marcus have informed the National Academy of Sciences, researchers For more information on the scleroderma Gleevec study at Northwestern, contact Julie Johnson, project the Sclero Sun of her passing and have chosen to honor Orange County support group, has lost her battle with show that eating garlic appears to boost our coordinator, at (312) 503-2338. Scleroderma. this brave lady by making numerous donations in her natural supply of hydrogen sulfi de. The naturally name to our Chapter and to the National organization. Bonnie, along with her husband Sam, had many occurring chemical is actually poisonous at high connections in the region and brought them to bear as concentrations. It’s the same noxious byproduct As is often the case, many people choose to live and they confronted the reality of a chronic illness. of oil refi ning that smells like rotten eggs. But the pass anonymously with Scleroderma. Yet Joanne and body makes its own supply of the stuff, which acts as an antioxidant and transmits cellular signals that Lowdown on the Hoedown her loved ones prove that a lasting impression can Her lovely personality and presence will be missed by help to relax blood vessels and increase blood fl ow. Once again, the La Habra Hosts Lion’s Club circled the wagons at Pete’s still be made both in name and in spirit through their those who had the privilege of knowing her. important contributions. In recent studies performed at the University of Alabama at Birmingham, researchers extracted juice Ponderosa Ranch in Whittier, fi red up the grill, turned up the music and from supermarket garlic and added small amounts to human red blood cells. The cells immediately kicked up their heels for the benefi t of the Southern California Chapter of the Scleroderma Foundation. Sharon Jeffrey ______Sheri Rudd Klittich ______began emitting hydrogen sulfi de, the scientists found. With the deft and sure organizing skills that only the Lion’s can bring to The Chapter has received notice of the passing of With friends and family by her side, Sheri Rudd Klittich, That, in turn, may help explain why a garlic-rich diet appears to protect against various cancers, including those of the breast and colon, as well as help to lower blood pressure, say the study authors. these types of affairs, the evening of do-se-do-ing, raffl ing, and great Sharon Jeffrey after a short battle with Scleroderma. an active member of the Chapter’s Ventura County conversation proved once again to be a great way of raising awareness Along with her husband Joe, Sharon was a resident of support group, has sadly lost her long battle against Higher hydrogen sulfi de might also protect the heart. Although garlic has not been shown to lower of Scleroderma while raising the funds necessary to promote research Hemet,CA, where she hoped to work on her golf after both Scleroderma and Ovarian Cancer, passing away cholesterol levels, researchers have found that injecting hydrogen sulfi de into mice almost completely projects and education programs here in the Southland. retiring from her career with the Los Angeles County in November. prevented the damage to heart muscle caused by a heart attack. If barbeque is to your taste, the Lion’s know how to serve it Offi ce of Education. People seem to have instinctively known garlic was important and has health benefi ts for centuries. Born in Tucson, Arizona and raised here in Canoga up with style in support of an important cause! As usual, the good food, Friends and family have made many donations to the It is reported that the Greeks would feed garlic to their athletes before they competed in the Olympic Park, Sherri was a graduate of Cal Poly San Luis great music and terrifi c people made for a very successful annual fund raiser for the benefi t of the Foundation in her name, assuring that Sharon will be games. Obisbo and held a Masters degree from the University Scleroderma Foundation. remembered for her dedication to researching the of Missouri in Agronomy She went on to lead the The concentration of garlic extract used in the latest study was equivalent to an adult eating about causes of Scleroderma. University of California Hansen Trust to promote and Thanks to the many volunteers who contributed and the dozens of supporters getting into the spirit of two medium-sized cloves per day. In such countries as Italy, Korea and China, where a garlic-rich diet the evening, the Lions put together a good old fashioned hoe down of hope! sustain agriculture in Ventura County. She helped the seems to be protective against disease, per capita consumption is as high as eight to 12 cloves per Walter Holland ______county acquire the Faulkner Farm in Santa Paula, an day. While that may sound like a lot of garlic, increasing consumption to fi ve or more cloves a day isn’t instructional facility where she taught both students hard if it’s used every time you cook, as many cultures do. After a valiant struggle against Scleroderma and it’s and teachers lessons in agriculture. In her honor, the many complications, Walter Holland has passed away. Many home chefs mistakenly cook garlic immediately after crushing or chopping it. To maximize the UC Hansen Trust has established a new grant program health benefi ts, you should crush the garlic at room temperature and allow it to sit for about 15 minutes. A resident of Placentia, CA, friends and family made to educate future agronomists and an instructional That triggers an enzyme reaction that boosts the healthy compounds in garlic. sure to honor his life and accomplishments by making barn on the property now bears her name. donations in his memory, helping to continue the work While garlic can cause indigestion, the bigger concern is that it can make your breath and perspiration Sheri is survived by her husband, Chris, her three of Southern California Chapter of the Scleroderma smell like…garlic. While individual reactions vary, eating fennel seeds like those served at Indian children, and a large group of family and friends in Foundation. restaurants helps to neutralize the smell. Also, while garlic-powder pills claim to solve the problem of Ventura County. Her determination and bright spirit will odor while preserving the health benefi ts, data on these supplements has been mixed. It’s still not clear be missed by all. if the benefi cial compounds found in garlic remain potent once it’s been processed into a pill.

Self-pity in its early stage is as snug as a feather mattress. When angry, count to ten before you speak; Only when it hardens does it become uncomfortable. if you’re very angry, a hundred. -Maya Angelou Page 6 -Thomas Jefferson Winter 2009 The ScleroSun The ScleroSun Winter 2009 Page 7

More Research Needed to Tea: The Elixir of Life Thousands Attend Assemblywoman Sharon Delicious, low-calorie, and 2008 Rheumatology Conference Understand Scleroderma brimming with antioxidants, tea Runner Passes Resolution by Jennifer Wider, M.D. is quickly becoming the most The European League Against Rheumatism (EULAR) is the Society for Women’s Health Research To Bring Awareness Of commonly consumed beverage organization which represents the patients, health professionals, With an estimated 14 million cases worldwide, after water. Even in and scientifi c societies of rheumatology of all the European nations. Scleroderma To California the U.S., its popularity is rapidly worldwide, you would think more would EULAR endeavors to stimulate, promote, and support the research, Sacramento be known about scleroderma, a chronic, growing. And why not? With the prevention, treatment, and rehabilitation of rheumatic diseases of the debilitating disease that can lead to the health benefi ts you stand to gain, connective tissue, locomotor and musculoskeletal systems. Assemblywoman Sharon Runner (R – Lancaster) announced hardening and tightening of skin and you, too, will want to drink up. that the California State Assembly has passed Assembly Recently EULAR held it’s annual congress in Paris, France. Attracting Concurrent Resolution 142 to proclaim the month of June as connective tissue. Soak Up the Health Benefi ts approximately 14,000 participants, an intriguing variety of research Scleroderma Awareness Month. What we do know is that scleroderma It is no wonder that tea is the and incipient therapies were presented to the attendees, concentrating on practical rather than is at least three times more common beverage most commonly enjoyed basic aspects of Rheumatology. “This is the fi rst time the Assembly in women than in men. The cause by centenarians around the world. has recognized a Scleroderma Representing the University of California Los Angeles and the Southern California Chapter of remains unknown. For some people, Tea is full of powerful antioxidants Awareness Month,” Runner said. the Scleroderma Foundation at the conference was noted scleroderma researcher and chapter the disease remains local and mostly that improve concentration and “ACR 142 seeks to promote a state- president Dr. Daniel Furst, who addressed those attending with an overview of advances in various affects the skin of the face and hands, causing it to tighten and thicken. For gently boost energy.To get the most health from your tea, brew it fresh from wide discussion on scleroderma, fi elds of research. others, the disease is systemic and more severe, affecting the skin and tea bags or loose leaves and herbs. Let the tea steep for three to fi ve minutes and the need for more research other organs including the kidneys, gastrointestinal tract, heart, lung and to extract the most benefi cial compounds. Drink to your health! Of most interest to those affl icted with scleroderma has been developments in the area of to improve patient care for those living with the disease.” joints. It can cause damaging fi brosis, which is the abnormal formation Cut the Morning Coffee mesenchymal cells. or development of excess fi brous connective tissue in an organ or tissue. Caffeine in both coffee and tea acts as a central nervous system stimulant. Too Mesenchymal stem cells are multipotent adult stem cells that can differentiate into a variety of cell “This resolution is a source of happiness,” Runner said in Having a family member with scleroderma seems to increase a person’s risk much can cause you to experience stress, anxiety, a racing mind, and even types. Mesenchymal cells and progenitor cells from the bone marrow, for example, are being used her fl oor speech. “ACR 142 represents the joy patients for developing the disease, but other factors may be at play. Familial studies insomnia, working against your attempts to relax the body and calm the mind. to treat resistant scleroderma ulcers. experience when they are able to live their everyday lives due suggest that there is an increased risk in fi rst degree relatives of scleroderma A healthier alternative to coffee is herbal tea. On average, a cup of black tea to the medical treatments available to treat the symptoms of patients, but studies looking at scleroderma in twins suggest than an inherited contains about one third of the caffeine you would get from the same cup of According to Dr. Furst, these mesenchymal cells are placed on the resistant wounds, and have been scleroderma.” genetic background is not alone suffi cient to develop scleroderma. Some studies coffee. Green tea contains about one sixth of that amount. shown to heal ulcers that have failed to recover in every other way. “It is also a source of sadness as this resolution represents indicate that environmental factors may be involved in causing the disease. Of course, caffeine content will vary depending on the particular tea and Other unique techniques and potential therapies were discussed at EULAR throughout the course of those patients who are in constant pain or need a transplant These factors possibly trigger scleroderma in individuals with a susceptible the brewing time. One way to naturally decaffeinate your tea is to steep the annual event, giving proof of ongoing advances in the fi eld of Rheumatology worldwide. due to damaged organs,” Runner continued. genetic background. for 45 seconds, pour out the liquid but keep the tea leaves, then add fresh More information about the European League Against Rheumatism and it’s upcoming events can “I am thrilled that the California State Assembly has Scleroderma can be diffi cult to diagnose because the symptoms can mimic boiling water and let it steep for 3-5 minutes or longer to allow the benefi cial be found at www.eular.org. recognized June as Scleroderma Awareness Month and that many other diseases, especially if the joints are involved. polyphenols to be extracted from the tea. the state is now promoting the need for increased research There is currently no cure for scleroderma, but the symptoms can be managed Slim Down with Tea to better the lives of those affected by the disease,” said with appropriate treatment. Topical treatments such as moisturizers and As a weight loss tool, tea is a wonderfully cleansing way to fl ush the system, NSAIDs can boost Brian Adams, executive director of the Southern California corticosteroids may help ease skin symptoms. Medications such as anti- replace fl uids - and pump the body full of powerful antioxidants at the same Chapter of the Scleroderma Foundation. Adams, along with infl ammatory drugs can ease joint stiffness and circulation problems can be time. Aside from the health benefi ts, tea is a zero-calorie beverage, making it blood pressure board member Joe Matthews, were among those gathered in addressed with calcium channel blockers and ACE inhibitors, which are most your best choice for weight loss. To sweeten the tea without the extra calories, the Assembly Chambers to see the passage of ACR 142. As patients with the various symptoms of Scleroderma should commonly used to treat high blood pressure. Other medications can help with forgo the sugar and instead try honey or a stick of cinnamon. know, keeping blood pressure in the low to normal range is digestive or pulmonary issues. More research is needed to shed light on this The Healthy Varieties of Herbal Teas vital in order to protects the kidneys as they do their important disease and hopefully make more progress toward a cure. Aromatic and chock full of amazing health benefi ts, herbal teas are made from work of fi ltering toxic wastes from the blood stream. June is National Scleroderma Awareness Month. For more information on the various leaves, roots, bark, or fl owers. Here are just a few: A warning to heed is that certain anti-infl ammatory drugs disease, you can contact the Southern California Chapter of the Scleroderma frequently recommended or prescribed might raise blood pressure and potentially damage delicate Foundation at 1-877-443-5755 or the Scleroderma Foundation at its Web site, structures already affected by Systemic Sclerosis. http://www.scleroderma.org Ginger: Soothes the digestive system and keeps your energy fi red up It is very important to remember that many over the counter nonsteroidal anti-infl ammatory preparations containing drugs such as Ibuprofen and Naproxin or prescription medications such as Celebrex, Mobic or Voltaren can raise blood pressure signifi cantly, especially when used long term. Settles the stomach and is calming and Chamomile: Even Acetaminophen, commonly found in Tylenol products and many other pain relievers, is linked Help the Scleroderma Foundation soothing for the nervous system Earn $25 Through H&R Block’s to hypertension. Peppermint: Increases healthy gastric secretions, Though topical NSAIDs found in anti-infl ammatory creams are less likely to cause harm, they too can Non-Profi t Referral Program relaxes the intestines, and settles the be absorbed through the skin and into the blood stream, especially when used in large amounts. stomach When using pain relievers, especially those recommended by friends, alternative practitioners and The program is easy and convenient. doctors, it is important to talk them over with a primary physician familiar with the treatment of H&R Block can help you raise money for Detoxifi es and supports healthy liver Dandelion: Scleroderma. us! For each new client referred to have functions their taxes done by H&R Block, H&R A natural herbal substitute for sleeping pills And, of course, Scleroderma patients should always monitor their blood pressure and alert their Block will provide a program reward of $25 to the Scleroderma Foundation! Valerian: doctors when it’s found to be higher than the normal 120/80. It can make a huge difference in regards to the functioning of the kidneys. To receive the program reward, you must be a new client and must bring a referral form to H&R Block when they have their taxes done. The program begins You can combine these herbs in any combination according to your taste and January 1, 2009 and continues through November 1, 2009. health preferences.

The sound of a kiss is not so loud as that of a cannon, but its echo can last a great deal longer. Happiness makes up in height what it lacks in length. -Oliver Wendell Holmes -Robert Frost Page 8 Winter 2009 The ScleroSun The ScleroSun Winter 2009 Page 9

Scleroderma Foundation The Personal Journey F.D.A. Seeks to Southern California Chapter Ten Ways To Stay Sane 11704 Wilshire Blvd., Suite 250 Of One Of Our Own! Broaden Range P. Murali Doraiswamy, an Alzheimer’s expert at Duke University Medical Center and co-author of the Los Angeles, CA 90025 by M.F. Kelly book, “The Alzheimer’s Action Plan,” says that there are many simple ways to reduce the chances of (877) 443-5755 -Toll free of Use for Drugs memory loss and help keep your brain in shape: (310) 477-8225 -Offi ce In March 2008, Kelly When federal drug regulators approve (310) 477-8774 -Fax Ryan became involved a medicine for sale, they limit how drug (877) 443-5755 -Espanol with the Southern Eat well makers sell it. A drug approved to treat email: [email protected] California Chapter of the A rule of thumb is that what’s good for your heart is good for your brain. Indulge only cancer cannot be marketed for 1 website: www.sclerodermasocal.org Scleroderma Foundation. in fruits and vegetables and foods with B-complex vitamins, like oats, barley and Scleroderma even if studies suggest that wheat bran, and omega-3 fatty acids. Avoid foods with saturated fat, found in She specifi cally works We are a Chapter of the the medicine may save SSc patients. fried foods, butter and cheese. in public relations to Scleroderma Foundation of Danvers, Mass. But the Food and Drug Administration has recently proposed guidelines that would change this, and assist in achieving the Dues are $25 for an annual membership advocates on both sides of the issue say that lives are at stake. visions and goals of Exercise and should be mailed the Foundation. Kelly The rules would allow drug makers to provide doctors with copies of medical journal articles that discuss 2Physical activity increases vasodilation and blood fl ow through your organs, to the Los Angeles address. leads the San Fernando product uses that have not been approved by the F.D.A. The rules also say that drug companies do not including your brain. As little as 30 minutes of low-level activity like brisk Valley support group. have to promise to adequately test the unapproved use discussed in the articles, leaving that task to walking works wonders. Executive Director: Brian Ross Adams Her warmth radiates every meeting and inspires the research centers and patient experiences with their medical providers. President of the Board: Daniel Furst, MD patients with Scleroderma. Kelly welcomes everyone Play games Board Secretary: Bonnie Davidson including family and friends! Advocates of the rule say the F.D.A. is so slow in assessing a drug’s benefi ts that companies need to be able to hand out medical journal articles so that doctors can learn immediately about life-saving uses. 3Brainteasers and puzzles are good exercises for the brain. So are those that Kelly was diagnosed with SLE Lupus in 1992 and Journal articles can offer physicians valuable insight that helps them make informed decisions regarding force you to use strategy like chess and bridge. Looks for activities that call for Scleroderma in 2006. Her challenges have also appropriate medical treatments for their patients. interactions with others. The ScleroSun included Pulmonary Fibrosis, GI Refl ux, Raynaud’s The Sclero-Sun is a publication But critics of the proposal say that drug companies have a long history of promoting unapproved drug phenomenon, and soft tissue skin tightening. Kelly has of the Scleroderma Foundation/ uses that later proved dangerous and that allowing unapproved uses removes incentives for companies Learn a new skill fortunately found a program that has worked for her. A long term goal such as learning a new language or learning to play a musical Southern California Chapter. to research adequately whether the new use is actually benefi cial. 4 She successfully completed the Wellness Program at instrument will challenge the brain on many levels. Cedars Sinai It involved physical therapy, pulmonary The reason for this debate is that doctors are not overseen by the F.D.A., just medications. A 2006 study Editor: Robert Rich rehabilitation, and nutrition education with awareness. estimated that more than 20 percent of all prescriptions written by doctors were for unapproved uses that Make everyday activities harder Her health and wellness are currently monitored by in most cases are quite benefi cial to those who take them. But in some instances off label usages have You can stimulate your brain just by mixing up your daily routine. Try brushing Phone: (877) 443-5755 or (818) 991-7342 physicians from U.C.L.A. and Cedars Sinai. caused more harm than good. Hence the cautious approach. 5 your teeth with the opposite hand or showering with your eyes closed, anything Using her professional background as a news reporter, The F.D.A. has for years struggled to fi nd the appropriate balance between the need to inform doctors that will force you to use more of your senses. [email protected] producer, actress, and in public relations, she created a of experimental but hopeful drug uses and the need to guard against promoting dangerous products. video of the Walkathon which took place at La Mirada Congress stepped in to resolve the issue in 1997, passing a law that let drug makers hand out studies Article ideas are very welcome. Read. Read. Read. Please call, email, or mail to: Regional Park on June 8, 2008. She was able to get from medical journals as long as reprints were given to the F.D.A. beforehand and they promised to seek 6Whether it’s the internet, a novel or a newspaper, keep your mind engaged in Boy Toy Jesse from 102.7 KISS-FM to be part of the approval from the agency of the use discussed. That law lapsed in 2006 and questions have since been the written word. day’s event. His involvement included an interview with raised since about what the policy is. Under the proposed new rule, the agency would let drug companies ScleroSun, 6649 Maplegrove St. Congresswoman Linda Sanchez of California which pass out articles to doctors if they were peer-reviewed and came from a journal with an expert editorial Oak Park, Ca 91377 was aired nationwide. board. The article must also be accompanied by a prominent warning that the use described is not Relieve stress Try yoga, meditation and cat naps. Relieving anxiety has been shown to increase approved or cleared by the F.D.A. 7 Kelly also decided to contribute her time to being on cognitive function. Any type of relaxation technique can keep your brain active Email Directory the Committee for the 12th Annual Key to a Cure Gala Diane Edquist Dorman, vice president of the National Organization for Rare and healthy. The Chapter offi ces maintains an email directory of all which was held on November 1, 2008. Her involvement Disorders, said she supports the F.D.A. position because our members to facilitate important communications. If included creating a video that would would highlight patients with rare diseases are generally Socialize you haven’t given us your email address, please send to: the very special work of 13-year old Cynthia Cervantes treated with unapproved drug uses The brain loves activity. If your lifestyle leaves you isolated, seek out social [email protected] who recently testifi ed before Congress. Cynthia shared about which doctors must be 8 activities such as support groups that will surround you with people. New her experiences about coping with Scleroderma. informed. scenery and other multi-sensory activities force the brain to form new Disclaimer Congresswoman Linda Sanchez was instrumental in “These companies are connections, increasing memory capacity. The Scleroderma Foundation and the Southern California Chapter do not getting Congress to hear the testimony of Cynthia. just never going to do endorse any drugs or treatments reported here. Information is provided Kelly knows how important it is to stay committed to the confi rmatory trials Drink to keep readers informed. Because the manifestations and severity of herself, despite her many roles. She has found that when only a couple of 9But not too much. Studies have shown that people who drink small amounts of scleroderma vary among individuals, personalized medical management giving back to our community has helped in her own hundred people have alcohol — between one and six drinks per week — are less likely to develop is essential. Therefore, it is strongly recommended that all drugs and recovery. the disease,” she said. dementia than people who don’t drink at all. Doraiswamy says red wine, in treatments be discussed with the reader’s physician(s). But critics say the rule particular, has anti-infl ammatory effects, which benefi ts the brain. But don’t could stop companies overdo it — heavy drinking exhausts and depletes the brain. from underwriting the expensive trials used Sleep to confi rm a new drug 10 Healthy sleep is key to maintaining memory function since your brain locks in uses. They complain new information during REM sleep. Adults should get seven to nine hours of that companies could sleep each night. openly promote products for unapproved indications without testing these drugs. Anyone who has never made a mistake has never tried anything new. -Albert Einstein No act of kindness, however small, is ever wasted. - Aesop Page 10 Winter 2009 The ScleroSun The ScleroSun Winter 2009 Page 11