Having trouble reading this email? Click here to view in a browser. October 2, 2017 Serving Indiana   What kinds of Health Care Providers usually treat children with lupus? Scroll down for the answer. A Message From Our New CEO, Yolanda Wide Dear Friends, Greetings! As an Indiana native, I grew up witnessing the inequalities in health. My mother was a young single parent, relying on free or low-cost healthcare. I remember, so vividly, waiting rooms full to capacity and long waits to see a physician. As a child, I didn’t know that people on the other side of the healthcare spectrum were not only receiving better access to care, but also better life-saving health education. These memories led me to a career path in public health, 13 years ago. Early on, I learned about advocating for people who weren’t able to do so for themselves. I also learned the importance of philanthropy, not only as a giver, but also as a requester of funding to assist the greater cause. I see lupus as a great cause. It is a cause that deserves Answers, Education and Support. The board and staff of the Lupus Foundation of America, Indiana Chapter are dedicated to providing Answers, Education and Support to people diagnosed with lupus. Today, people are living longer, healthy lives. But, there is still so much more to do. I am grateful to be able to assist. I look forward to seeing you all at the Walk to End Lupus Now on October 7, 2017. Yolanda Wide, CEO, Lupus Foundation of America, Indiana Chapter      Walk to End Lupus Now -5- Days Away! Can you believe the Walk to End Lupus Now™ is only -5- days away?! The momentum for the Walk is still growing! More than 111 teams have been formed by more than 700 Walkers! If you haven't started your team yet, there is still time! Click here to register for the Walk to End Lupus Now - Indianapolis on October 7th at Celebration Plaza at White River State Park/Canal Walk.  When you take part in a Lupus Foundation of America, Indiana Chapter's Walk to End Lupus Now™, you experience firsthand the power of the movement to end lupus. Join us in Indianapolis to raise money for lupus research, increase awareness of lupus, and rally public support for the estimated 36,000 Hoosiers who suffer from its brutal impact. If you plan to Walk with us, you may find this document helpful: What to Expect on Walk Day In The Loop - Healthy Living with Lupus Symposium             Get in the loop by attending this year's 'In the Loop - Healthy Living with Lupus' educational symposium being provided by our Chapter! This year instead of having several small seminars, we will be having one full-day symposium. Attendees will be able to select topics of interest from morning and afternoon breakout sessions led by national and local professionals. Date: Sat., Dec. 9, 2017 Time: 9:30 am -3:45 pm (check-in, continental breakfast and exhibit booths from 8:30-9:30 am) Location: Crowne Plaza Airport, 2501 S. High School Rd. in Indianapolis. We’re very excited about the excellent panel of speakers who will be joining us at the ‘In the Loop – Healthy Living with Lupus’ symposium on Sat., Dec. 9. One of these speakers is Sara Gorman, who will be leading a breakout session entitled “Despite Lupus: How to Live Well with a Chronic Illness.” Our Chapter has been privileged to have Sara as a speaker at previous seminars and awareness events and if you haven’t yet had an opportunity to hear her speak, we know you’re going to enjoy her upbeat presentation. Sara was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus. Her book, Despite Lupus: How to Live Well with a Chronic Illness, details the steps it took to reach that goal and has received the LFA Seal of Approval. Letting go of her career, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental steps she took to reach her goal of living well, despite lupus. A native of Indiana and graduate of the University of Notre Dame, Sara resides in Alexandria, Virginia with her husband and two young daughters. She continues to blog about living well with a chronic illness at www.despitelupus.com. Sara also launched a line of stylish, fabric pill organizers, which are manufactured in the USA. Her Pillfolds and Pillpouches can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com. Please visit http://www.lupus.org/indiana/events/entry/in-the-loop-healthy-living-with-lupus-symposium for symposium information, to see additional breakout session speakers and topics, and to register.                                        Cyclebar Rides Again... Gather family and friends and join us at Cyclebar Carmel on Sunday, November 5th at 1:00 p.m., for a 50-minute FUNdraising workout.  $30 per rider. All proceeds benefit the Lupus Foundation of America, Indiana Chapter.  More information will be available after October 5th at lupusindiana.org. Featured Events Research Support LFA, Indiana offers Gentle Yoga and Tai Chi classes for people with lupus and one caregiver or support person. The cost is free, but registration for your first class is required. Sign up now. When: Yoga on the 2nd Saturday of each month. Tai Chi on the 4th Saturday*  All classes from 11 a.m. - 12 p.m.  NOTE - October Yoga class will be held the 3rd Saturday Where: IU North Hospital, 11700 N. Meridian Street, Carmel. Learning Centers A & B.   Ask the Experts is a series of live educational teleconferences and pre-recorded web casts on a variety of topics designed to provide you with important information about living with lupus. These live teleconferences last one hour and are accessible via a toll-free number. Teleconferences will also be recorded and posted online. Pre-registration is required. Call-in/log-in information will be provided to all registrants one week before the event. On Wednesday, October 18,  LFA presents:Think Again: Coping with Lupus Fog. As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction. Learn more about "lupus fog", its symptoms and treatment options. Presenter: Pamela Thorpe, M.D. FACP, Lupus Survivor since 2001, Currently Medical Director of Pharmacovigilance in the Pharmaceutical Industry since 2007 Register here:  If you missed any of the previous Ask the Experts teleconferences, the recorded sessions and presentations are available on our website. It's time for another Vineyard Vines FUNdraising night.  On Thursday, November 30th, get a little holiday shopping done and support our Chapter at the same time. From 5-9 p.m., you can take 10% off your purchase, and Vineyard Vines will donate 10% to The Lupus Foundation, IN Chapter. More information available soon on our website. Lupus Community Shares Views with FDA Top decision makers at the U.S. Food and Drug Administration (FDA) heard from over 550 people impacted by lupus last week at an unprecedented in-person meeting and live webcast about what it’s really like to live with the disease and what they need most from new treatments. Three organizations – the Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance – organized the meeting as part of the FDA’s externally-led Patient-Focused Drug Development (PFDD) Initiative. The PFDD was created by the FDA to allow regulators to better understand the perspectives of people with diseases such as lupus so they can better assess the risks and benefits of drugs under review. The meeting featured two panels of people with lupus and family members and speakers that included clinicians,  represen-tatives from the FDA, and a community representative. Audience members also provided input throughout the day on symptoms and treatments. Dr. Anca Askanase, director of the Lupus Center at Columbia University Medical Center,  described the unpredictability and individuality of lupus with symptoms ranging from extremely debilitating pain and fatigue to serious organ damage. She detailed the inadequate treatments for lupus, describing their varying effectiveness and challenging side effects.  The Director of FDA’s Center for Drug Evaluation and Research, Dr. Janet Woodcock, urged participants to share the burdens of treatment as well as the burden of the disease. Participants answered her request with poignant accounts of how lupus and lack of symptom relief has robbed them of dreams for school, careers, and children.  Read More   LFA, Indiana Offers Statewide Support Groups The philosophy of LFA support groups is to provide a warm and caring environment where people with lupus, their family members, caregivers, and loved ones can share their experiences, methods of coping, and insights into living with lupus.  LFA support groups provide a comfortable learning environment to help members develop the best coping strategies to reduce stress that often accompanies living with a chronic illness. Our Chapter is fortunate to have professionally-trained volunteers to lead our support group meetings and offer support to lupus patients, friends, and family members. More information about our support groups To help us make others aware of our support group meetings, would you please share and/or post a flier of our support group meetings? Support Group PDF for sharing If there’s a specific support group meeting in your community that you’d like to help us promote by posting/sharing a flier specific to that support group, please contact Debbie Campbell.   Online Support Group Facilitators Needed There's no need to leave home to participate in a support group! You can get comfortable and share experiences, methods of coping and insights into living with lupus by participating in our online support group. The online support group meetings are now being held the last Monday of each month from 7:00-8:00.  Support is literally only a click away. To register or learn more click here   LFA Indiana is currently seeking facilitators in Bloomington, Evansville, Kokomo, Lafayette and northwestern Indiana.  You've always thought about helping others with lupus, so what's holding you back? You have valuable experiences and information that can help others with lupus manage their disease effectively. Share your knowledge and experience in the best way possible --become a support group facilitator! Training will be provided. If you are interested in leading a support group or you know someone who is, please reach out to Debbie@lupusindiana.org.   Click the button below to become a Champion for Hope with your monthly gift of $10, $15, $25 or more to the Lupus Foundation of America, Indiana Chapter and make a difference in the lives of those affected by lupus. Your support will help bring us one step closer to our vision of a life free from lupus. Children with lupus are usually treated by a pediatric rheumatologist (a specialist in diseases of the musculoskeletal system in children and adolescents), or an immunologist (a specialist in diseases of the immune system) who is familiar and comfortable with the special needs of children. To read more click here. You are receiving this email because you are subscribed to the Lupus Foundation of America, Indiana Chapter's newsletter. If you would like to unsubscribe or change your preferences, please click here. Lupus Foundation of America, Indiana Chapter 9302 N. Meridian Street, Suite 203 Indianapolis, IN 46260 Tel: 800.948.8806 lupusindiana.org