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LFA, Indiana Chapter Cruel Mystery

August 1, 2017

Newsletter



Serving Indiana

 
Question

How does lupus affect the skin?

Scroll down for the answer.

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A Message from our Board Chair, Dr. Camie Wright

Dear Friends,

This year’s A Tasteful Affair was a tremendous success and we have you to thank! I’d like to express our gratitude to all of this year’s sponsors, volunteers and guests.  A special thanks goes to The Bishops for their wonderful entertainment and to Ken LaRose and Lauren Lowrey for their engaging hosting.

We are now gearing up for our next exciting event! The 2017 Walk to End Lupus Now will be on Saturday, October 7, 2017 at 12 pm at Celebration Plaza at White River State Park/Canal Walk.  We currently have 52 teams registered and would love to have your support as well! Event details can be found here. We also encourage you to ask your employers to consider sponsoring the event and build a team of co-workers, family, and friends. We have three different contests going on August 1 - 14 -- read all about them in the Walk article below. 

We are excited to announce that our inaugural symposium, In the Loop: Healthy Living with Lupus, will take place on Saturday, December 9, at 9:30 am at the Crowne Plaza Airport in Indianapolis. This full day conference will feature various speakers who will discuss topics of importance to those impacted by lupus. Dr. Susan Manzi, Director, Lupus Center of Excellence and Chair, Department of Medicine Allegheny Health Network, will be our special guest. The Indiana State Health Department will also present on the importance of awareness and research for lupus. More information and symposium registration can be found here.

Finally, I’d like to mention our continuing Walk to End Lupus Now, Indianapolis sponsor, Duke Energy. Through their longtime sponsorship of the Walk, we have been able to provide patient bags at the walk each year, and we appreciate all that Duke Energy does for our Indiana Chapter. Read more about Duke Energy and watch their sponsorship video below in the Spotlight section. 

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Camie Wright, M.D., Board Chair, Lupus Foundation of America, Indiana Chapter


     Walk to End Lupus Now Team-Building in Progress

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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.

The momentum for the Walk to End Lupus Now™ Indianapolis is growing! We already have more than 50 teams signed up and raising funds. If you haven't started your team yet, this is the time!

We have 3 contests and 3 chances to win August 1st through August 14th.  

  • The team captain who raises the money between August 1st and 14th will receive two passes to Holiday World and Splashin' Safari theme park. 
  • The individual who raises the most money in that same two week period will receive a 1-hour traveling petting zoo during the weekday (donated by The Indianapolis Pony Ride Parties and Petting Zoo). 
  • The team captain who signs up the most team members between August 1st and 14th will receive a lupus merchandise prize package including a picnic blanket, t-shirts, and more!

Hear Carla Day talk about why the Walk is important to our Chapter and the contests that begin August 1st!

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. 

We now have Walk to End Lupus Now yard signs available for pick up at our office. Please email lisa@lupusindiana.org if you are interested in picking one or more of them up to set out for all to see.

Contact our Chapter office at 317.225.4400 or 800.948.8806 for help getting started in 2017, or for fundraising ideas ~ we are here to help you have your best walk year ever!

In The Loop - Healthy Living with Lupus Symposium

In the Loop

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.

Dr. Susan Manzi, Director, Lupus Center of Excellence and Chair, Department of Medicine Allegheny Health Network .will be our special guest. Also hear from the Indiana State Health Department on the importance of awareness and research for lupus and other health disparities.

Lupus and Mental Health - Judy Schaff, psychotherapist who has lupus

“Despite Lupus: How to Live Well with a Chronic Illness” - Sara Gorman, author and health blogger who has lupus

Lupus and Healthy Sleep - Dr. Stephanie Jackson, IU Sleep Disorders Center

Gentle Yoga/Tai Chi Session - Pam Glenn/Bonnie Sweeney

Value of Alternative Methods in Dealing with Chronic Disease - Dr. Ralph Waldo, Connected Health Care Systems

Stress Management - Sydney Johnson, CHW, Anthem Indiana Medicaid

Relationships, Emotions and Intimacy - Iris Zink, President, Rheumatology Nurses Society

Energize Me: Diet, Meal Planning and Exercise - Shantay Glover, YMCA Certified Fitness Trainer

How to Advocate - Gary Gibson, President/CEO, Martin Center Sickle Cell Initiative

Lupus and Overlapping Connective Tissue Disease - Dr. Kathleen O’Neil, Chief, Pediatric Rheumatology, Riley Hospital for Children at IU Health

Lupus and Pain Management - Dr. Steven Neucks, rheumatologist, board certified in pain medicine, Rehabilitation Associates of Indiana

Purchase Tickets - Registration is required by Tues., Dec. 5.

$20/person ticket includes continental breakfast, symposium materials, goodie bag and lunch. Scholarships are available by calling the LFA-IN office.

If you will be coming to Indianapolis on Friday evening and require hotel accommodations, a group rate of $139/night is available. The hotel offers an indoor pool and exercise room for guests' enjoyment. To book a hotel room at this rate, visit https://aws.passkey.com/e/49134279 or call 317.244.6861 and ask for reservations department and provide group code "LUP" or tell reservationist that you are with the Lupus Foundation. This group rate is also good for Saturday night, December 9. To ensure room availability and this group rate, reservations must be made by Wednesday, November 8. Blocked rooms held for symposium guests will be released after this date.

LEARN MORE


Spotlight on DUKE ENERGY

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Duke Energy 2016

Duke Energy makes life better for millions of Hoosiers every day by providing electric and gas services in a sustainable way --affordable, reliable, and clean. The company invests in the communities it serves and is once again sponsoring the Walk to End Lupus Now in Indianapolis. In addition to supporting the Walk, this sponsorship also helps with the purchase of the lupus patient bags.

Duke Energy is the largest electric power holding company in the United States, supplying and delivering energy to approximately 7.3 million U.S. consumers. Duke Energy Indiana is a regulated public utility primarily engaged in the generation, transmission, distribution, and sale of electricity in portions of Indiana. Duke Energy Indiana's service area covers 23,000 square miles and supplies electric service to 810,000 residential, commercial, and industrial customers. Headquartered in Charlotte, North Carolina, Duke Energy is a Fortune 250 company.

Our Chapter thanks Duke Energy for their support! Watch Lou Middleton of Duke Energy talk about why they support LFA, Indiana Chapter.

READ MORE


Featured Events

Research

Support

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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 - September and October Yoga classes will be held the 3rd Saturday

Where: IU North Hospital, 11700 N. Meridian Street, Carmel. Learning Centers A & B.

NOTE -September Tai Chi class will be held in Room K130.

 


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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. Don’t miss this opportunity to learn from some of the world’s leading lupus experts from the comfort and privacy of your home.

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.

The August 16th teleconference topic is Let's Talk About Lupus and the Eyes, 7:00-8:00 PM EST. 

The latest in prevention, diagnostics and treatment options for a wide spectrum of eye conditions - from the routine to the complex. Learn why Cleveland Clinic Cole Eye Institute is ranked No. 1 in Ohio and No. 8 in the U.S. by U.S. News & World Report.

Presenter: Careen Lowder, MD, PhD, Cole Eye Institute; Cleveland Clinic

Learn more or register here

If you missed any of the previous Ask the Experts teleconferences, the recorded sessions and presentations are available here on our website.

 


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Circle of Bosses presents the Lupus Awareness Gala on Friday, September 8, 2017, in Anderson, Indiana. Food, drinks, live music and auction fun! For more information email Robert at cobindiana@gmail.com

A Make Your Mark Event

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  • Make Your Mark™ is the Lupus Foundation of America's community fundraising program. It gives everyone a chance to get involved in supporting the fight against lupus. The Make Your Mark™ program will help you to create a unique event —so that you can make your mark in solving the cruel mystery of lupus. Learn more

 

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FDA Approves GSK’s BENLYSTA as a Weekly Self-Administered Injection to Treat Lupus

On Friday, July 21, 2017, the U.S. Food and Drug Administration has approved a new subcutaneous formulation of Benlysta (belimumab) for subcutaneous use (SC), providing a new, less invasive method for administering this therapy to treat lupus.

This new formulation of Benlysta, produced by GSK, would be the first self-injection lupus treatment that people with lupus can administer at home once per week.  Previously patients receiving Benlysta had to travel to a medical facility for monthly infusions.   

Dr. Susan Manzi, Chair of the Department of Medicine of Allegheny Health Network in Pittsburgh, and also Medical Director for the Lupus Foundation of America said, “The new injection formulation of Benlysta will provide a convenient option for our patients who prefer to administer the medication at home instead of taking the time for a one hour infusion at a remote location.  We are always looking for better ways to serve our patients and this is a major step forward.”

Benlysta was first approved as a monthly infusion therapy for lupus in March 2011. Patients on this original formulation had to travel to an infusion center to receive the therapy.  GSK’s Benlysta SC will be self-administered as a weekly injection into the fatty layer of tissue just under the skin. It will be available as either a single-dose pre-filled syringe or from a single-dose auto-injector.

Benlysta SC is expected to be available by the end of August from specialty pharmacies. More information is available from the GSK media release

Learn more about Benlysta on the National Resource Center on Lupus website.

 

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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.

 

Online Support Group

Facilitators Needed


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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 Sunday of each month from 6:30-7:30 pm. 

Support is literally only a click away.

To register or learn more click here

 

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LFA Indiana is currently seeking facilitators in Bloomington, Crown Point, Kokomo, and Lafayette. We are also seeking a new online support group facilitator which can be done from anywhere in the state. 

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 andexperience 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.

 


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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.

Donate Now


Answer

Approximately two-thirds of people with lupus will develop some type of skin disease, called cutaneous lupus erythematosus. Skin disease in lupus can cause rashes or sores (lesions), most of which will appear on sun-exposed areas such as the face, ears, neck, arms, and legs. Lupus skin disease can occur in one of three forms: chronic cutaneous (discoid) lupus, subacute cutaneous lupus, and acute cutaneous lupus. To read more click here.


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Lupus Foundation of America, Indiana Chapter
9302 N. Meridian Street, Suite 203
Indianapolis, IN 46260
Tel: 800.948.8806
lupusindiana.org