LRI launches federal provider program
Singer Toni Braxton Shares Personal Story of Lupus
The Lupus Research Institute (LRI) National Patient Coalition participated in today’s launch of the Lupus Initiative®, the culmination of its five-year advocacy campaign resulting in $4.6 million in Federal funding to make the healthcare provider education program possible.
Helping to draw attention to the need addressed by the Initiative to train professionals in lupus diagnosis, six-time Grammy award winning singer Toni Braxton shared her personal story as a lupus patient and Board member of Lupus LA, an LRI Coalition partner. “It took years to be diagnosed with lupus,” said Ms. Braxton. “There were so many signs like joint pain and extreme fatigue, but it wasn’t until my white blood cell count dropped twice that I was finally tested for lupus. Proper treatment can only begin after lupus is diagnosed, so early detection is very important.”
Client Support in the 21st Century
From Debbie Lynch, CEO
One of the issues we have struggled with for the last 10 years is how to facilitate providing support, other than financial assistance, for those with lupus and their families.
In the early part of the decade we organized support groups, 18 to be exact, in various parts of the state. A written manual and training were available for group leaders as was a quarterly stipend for meeting expenses.
About 9 months into the first year, imagine our surprise when we were ready for the quarterly conference call and no one called in! Follow up phone calls found that for various reasons groups were not meeting, had disbanded altogether or had decided to call each other as needed.
LC launches electronic newsletter
Welcome to our first electronic newsletter. Lupus Colorado staff members couldn’t be more thrilled that hundreds of you responded to our mailing indicating that you want to continue receiving the newsletter, but in its electronic form.
“While we know there are some who will miss the printed piece, the cost-savings benefits are substantial,” said Lupus Colorado CEO Debbie Lynch. “If we can allocate more money directly into lupus research, we believe that is the responsible thing to do.”
Postage costs are increasing in 2013 as has been the trend for the past few years. Lynch estimates the organization will save more than $14,000 annually on printing and postage costs. The newsletter will still be published each month, but rather than be delivered to mailboxes, it will be delivered to Inboxes.
Not to be forgotten are the advantages to the environment. Reams of paper will be saved, not to mention envelopes, ink and stamps.