January 07, 2013

2013 Will Be Yet Another Landmark Year in the Fight Against Lupus

By Sandra C. Raymond

Happy New Year!

The year 2012 was a landmark one for the Lupus Foundation of America, and 2013 promises to be just as exciting.

Last year the Foundation launched its new rallying cry Help Us Solve the Cruel Mystery™ and the first Congressional Lupus Caucus was created. The Lupus Foundation of America supported research that contributed to the creation of a new test to help physicians make a faster and more accurate diagnosis of lupus. It was also the year when a record 67,000 people participated in our annual walk events in more than 60 cities, to raise nearly $5 million for lupus research and education. This year’s walk has been renamed Walk to End Lupus Now™, and we hope to make this another record-breaking year for fundraising. Read more about our top 10 achievements of 2012 here.

Looking forward to 2013, our Help Us Solve the Cruel Mystery™ National Tour is now making its way across the country, stopping in several cities. Our 45-foot purple bus is open to the general public in the cities it tours, and people can hop on and interact with eight exhibits to learn what it is like to live with the cruel mystery of lupus. They can also sign a petition to Congress asking for more funding for lupus research and education services. As part of the tour, the Foundation is also holding patient and physician education programs in each of the stops. This month the bus will stop in Los Angeles and Denver. Visit www.CruelMystery.org to check out these and future locations.

Mark your calendars for Lupus Awareness Month in May, when we will organize a number of exciting activities, and for the National Lupus Advocacy Conference on June 24th and 25th in Washington, DC. This is an opportunity for you to go to Capitol Hill to urge your Members of Congress to allocate more federal funding for lupus research, educate them about lupus to raise awareness, and present them with the petition signed by thousands of people around the country.

Our research team has some exciting new announcements this year, including the Lupus Insight Prize, which we will be presenting in collaboration with the Alliance for Lupus Research and the Lupus Research Institute. The Prize will recognize and honor an outstanding investigator with a documented record of creativity, innovation, and productivity in lupus research, and with a high likelihood of generating further advances in the diagnosis and treatment of the disease.

Also this year, we will launch a new caregiver section on our website, with a wealth of information to support care relationships and focus attention on caregivers themselves. The site will feature information on self-care and wellness for caregivers, as well as strategies and tips on how to cope with being a caregiver for a child, significant other, or parent who is newly diagnosed or living and coping with lupus.

We have many other major plans on the drawing board, so please keep in touch to stay abreast of what’s coming up.

Sandra C. Raymond is President and Chief Executive Officer of the Lupus Foundation of America

2 comments:

Carrie said...

My name is Carrie C. and I have had Lupus and Myositis now for years and it's been terrible! I am now on IVIG every 2 wks 2 times a wk it controls my whole life and has taken so much from me. I would never want anyone to go through what I have been through or my family has been through. I pray they will find a cure!

Motherhood What not to Expect said...

Could you please tell me where the best place would be in the United States for diagnosis and treatment of SLE today?