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LFNC News
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2014 Fund Campaign - Help us go the last third of the way!
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(LFNC subchapters and support groups are encouraged to let us know of your scheduled meetings and activities. Please email:
communications@lfnc.org)
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It was Colleen and Joe Brown this year. Will it be you next year?
Check out Colleen Brown, Joe, and daughter Kira picking up their brand new Mercedes!
Colleen and Joe have supported the Lupus Foundation for the past 15 years.
Do you want to join the Browns in the list of our winners? Because we know you do, we have opened up next year's drawing early, and you can already buy tickets!
The tickets are only $75, but you can get three (3) for $200 and five (5) for $300. Buy early, and you will be eligible for two incredible early bird prizes - a shopping spree and a cruise - in addition to the 2015 Mercedes!
To buy your tickets, fill out the form, or call the office at 408-954-8600. And keep your lucky charm bracelet handy!
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via "Lupus Online"
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Information contained in this e-Newsletter should not be considered a substitute for professional diagnosis, treatment or management of S.L.E. and symptoms by a physician.
Missed a previous issue of this e-Newsletter?
You can now view our ARCHIVES.
Editor: Spandan Chakrabarti
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You are receiving this newsletter because you have subscribed or have participated in our programs or events. We respect your time and privacy. If you prefer not to continue receiving the newsletter, you can click on the "safe unsubscribe" button below. We hope, however, that you will opt to remain on our newsletter list for important information and life-saving tips that you or someone you know may benefit from now or in the future.
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Time to Be Your Own Advocate: Urge Your Senator to Sponsor Biomedical Research Funding
From our leadership training to our conferences, LFNC has emphasized the need for patients and their networks to become their own advocates - whether in their physicians' offices or in the halls of power.
And today, the lupus community is being called on to advocate for a Congressional initiative to prioritize funding for biomedical research at the National Institutes of Health. The NIH is the largest funder in the world of medical research, but in the past years, funding has flatlined, according to the Lupus Research Institute. Sen. Tom Hartman of Iowa has introduced a bill in the Senate to increase funding for biomedical research - research that is crucial to finding treatments and cures for diseases like lupus.
The LRI (LFNC's national research partner), has this call to action:
To continue our national commitment to research and fighting lupus and other diseases, we ask U.S. Senators to co-sponsor and support ''Accelerating Biomedical Research Act"introduced by Senator Tom Harkin (D-IA) July 24, 2014. The Bill aims to prioritize funding for the National Institutes of Health to discover treatments and cures, maintain global leadership in medical innovation, and to provide consistent, reliable source for biomedical research. Lately, the NIH budget has been flat lined because of the budget battles in Washington. We need more federal funding for biomedical research on all diseases, especially lupus. The much-needed advances in lupus treatment of tomorrow depend on investment in NIH-funded research today.
We urge you to sign the petition on LRI's site to ask your Senators (in California, Sens. Boxer and Feinstein). The LFNC will send formal appeals to Sens. Boxer and Feinstein.
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Pediatric Chronic Cutaneous Lupus to SLE: Transformation Usually Within First Year
A new chapter has opened in pediatric lupus with a new study at the Lurie Children's Hospital in Chicago. Pediatric Chronic Cutaneous Lupus, according to the retrospective study, transforms into SLE for about a quarter of patients, and usually within the first year.
With so little known about pediatric lupus, the study, the results of which aligns with others done on smaller scales, may be good news for the families of children with CCLE, says Dr. Lisa Arkin, the chief researcher.
"Importantly, no one developed end-organ damage through the end of follow-up, perhaps suggesting that SLE arising in pediatric patients with CCLE follows a more indolent, benign course, just as we've seen in previous studies in adults with CCLE with transformation to SLE," Dr. Lisa Arkin observed at the annual meeting of the Society for Pediatric Dermatology.
For more on the study and key findings, please see here. |
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