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July 2015

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Serving Indiana

Question

 

What is palliative care?
 


U.S. House of Representatives Passes 21st Century Cures Act

Dear Friend,

I wish to share some important and exciting news!
In June our Chapter traveled to our
Watch the video from this year's National Lupus Advocacy Summit
Watch the video from this year's National Lupus Advocacy Summit
nation's capital to meet on Capitol Hill and participate in the National Lupus Advocacy Summit. Support for the 21st Century Cures Act was one of our legislative asks we made during our meetings with House members.  And many of you were advocating alongside us from home throughout the advocacy campaign.

Thanks to YOU, our Lupus Foundation of America activists, the U.S. House of Representatives passed the 21st Century Cures Act on July 10.  This legislation has the potential to improve the drug development process and bring new and vital treatments forward for people with chronic diseases like lupus. Lupus activists sent thousands of letters to members of Congress asking them to support to bill and the efforts paid off.

Only one drug has ever been developed specifically to treat lupus and approved by the US Food and Drug Administration. For the estimated 1.5 million Americans and 5 million people worldwide living with a form of lupus, one drug will never be enough to treat this cruel and mysterious disease.

The 21st Century Cures Act, spearheaded by Congressman Fred Upton (R-MI), provides an additional $8.75 billion in funding to the National Institutes of Health; establishes a public-private partnership to collect data and improve our understanding of diseases; supports patient-focused drug development; and modernizes the design of clinical trials and their review process.


This is only the first step. The action now moves to the Senate with their version of the initiative, the Innovation for Healthier Americans. The Lupus Foundation of America will continue to work with Congress to convey the need for robust funding for lupus research and development of new lupus drugs. 

This is just one example of your dollars and voices hard at work through the advocacy arm of our National Research Program.

We promise to bring you updates as they develop so please stay in touch and remember you CAN make a difference!

Sincerely ,

Morgan E. McGill
CEO
Thank you to our National Walk™ Sponsor


Walk to End Lupus Now™, Indianapolis
Registration for the Indianapolis Walk is now open!  Click here to register and start  raising funds for lupus. 

Thank you to our Sponsors:

  

Plans for the Indianapolis Walk to End Lupus Now™ Kickoff Rally  are underway and we hope you'll plan on joining us! The Kickoff Rally will be on Thursday, July 30, from 6:00-7:30 PM at the Basile Opera Center, 4011 N Pennsylvania St., Indianapolis 46205. 

We will equip you with valuable materials, information and resources to help you in your fundraising efforts during this Walk season.

You will hear from Top Fundraisers and Team Captains on how they became fundraising leaders. This is also a great opportunity to bring people who are unfamiliar with lupus or the Walk to find out more.

Come to...
... mix & mingle with your fellow walkers and teams.
... share fundraising ideas and get new tips.
... get equipped with Walk promotional materials.
... learn how you can make a difference in your community.

Sarah Lyttle will be treating us to a Laughter Yoga session!

A Tasteful Affair
A Tasteful Affair

Thank you to all those that were involved with ATA this year! You all played an imported role in helping raise just under $23,000! 

Every donation helps our efforts to solve the cruel mystery of lupus. Since people with lupus may not look sick, they may suffer from lack of sympathy and support as well as from psychological harm. When it comes to the emotional turmoil and suffering of lupus, we are here to listen and to make sure all patients receive education and support. 90% of every dollar raised stays in Indiana ensuring the Chapter continues to provide and expand our free statewide education, awareness activities and programs for lupus "thrivers."

With much gratitude,

Morgan E. McGill
CEO, Lupus Foundation of America, Indiana Chapter
Upcoming Events

July 25, 2015

'Purple for a Purpose' Youth Event
Park Tudor School
1:00 - 4:00PM
Indianapolis, IN 

July 25, 2015
Third-Party Fundraiser
Krazy Horse Krew's 4th Annual Rockin' Purple for Lupus Ride
The Elbow Room
Sign In: 10:00 - 11:45AM
Kickstands up at Noon
Kokomo, IN

July 30, 2015
Indy Walk Kick-off Rally
Basile Opera Center
6:00 - 7:30 PM
Indianapo lis, Indiana

Sept 26, 2015
Walk to End Lupus Now™, Indianapolis
Southeastway Park
Indianapolis, Indiana


Follow us @lfaindiana.
We are 117 followers and growing. Follow us!  


Please be reminded that if you would like to hold a Third-Party Fundraiser for our Foundation we will post your event on our Chapter website.

'Purple for a Purpose' Youth Experience, July 25


 'Purple for a Purpose' Youth Experience is an event for children and teens ages 7-19 who have lupus or have a family member with lupus. Parents are welcome to attend with their children. 


 
This educational and fun event will be held on Sat., July 25, from 1:00-4:00 p.m.


One-hour breakout sessions will be held with the following guest speakers:
* YOUTH WHO HAVE LUPUS - Kathleen O'Neil, MD, FAAP, FACR - Rheumatologist, Riley Hospital for Children
* YOUTH WHO HAVE FAMILY MEMBER WITH LUPUS - Michael Blakley, MD, FAAP, FACR - Rheumatologist, Riley Hospital for Children
* PARENTS OF YOUTH WHO HAVE LUPUS/HAVE PARENT WITH LUPUS - Kiana Johnson, PhD - Psychologist and CEO/Founder of The Childhood Lupus Education and Research Foundation

Attendees will also participate in an instructor-led canvas painting activity*! Light snacks will be provided.
 

REGISTRATION IS REQUIRED by Thur., July 23, and there is a $20 registration fee; however, the registration fee will be refunded at check-in. 

Location:
Park Tudor School
Middle School Media Center
7200 N. College Ave.
Indianapolis 46240

*All attendees are welcome to join in the fun and paint their own canvas masterpiece! Acrylic paints will be used but participants are welcome to bring a smock or old shirt.


For more event information, please contact Debbie Campbell at 800.948.8806 or debbie@lupusindiana.org

LFA-REAL™ Patient Stakeholder Advisory Group

LFA are looking for people with lupus who can provide opinions, experiences, ideas and feedback. Participants will be asked to sit in on WebEx meetings and will be in contact with the LFA-REAL™ research team members throughout the year. To learn more and/or to become involved with the program, please click here.

Support Groups

What to expect when you attend our lupus support group meetings...A warm and caring environment  where people with lupus, their family members, caregivers, and loved ones spend time with others impacted by this complicated disease. Sharing experiences, methods of coping, and insights into living with lupus helps members develop coping strategies to reduce the stress that often accompanies living with a chronic illness.  We hope you'll attend a support group meeting soon. Click here to see all Indiana locations and details about each group.

Ask the Experts: Lupus Diagnosis 

 

There are many challenges to diagnosing lupus. Known as "the great imitator," its symptoms mimic many other illnesses and can also be unclear, can come and go and can change. This month, Dr. Donald Thomas, author of The Lupus Encyclopedia, provides information about the diagnosis of lupus. 

 

 
Answer: Palliative (pronounced PAH-lee-uh-tiv) care is a health care approach that tends to the physical, emotional, social and spiritual needs of a person with an illness and the needs of his or her family. It can be offered to people at any age and at any point in an illness such as lupus. Though it is part of hospice care (care for the terminally ill who forgo further treatment), palliative care can be offered to anyone with a serious illness including those, like many lupus patients, who will likely live many years with their diseases.  Learn more.
 

If you're shopping online, don't forget that a portion of your purchase will benefit LFA Indiana Chapter when you shop using the links below.

Give Back While You Shop
 
Lupus Foundation of America, Indiana Chapter | 800.948.8806 | morgan@lupusindiana.org | http://www.lupus.org/indiana
9302 N. Meridian St., Ste. 203
Indianapolis, IN 46260