Before this Lupus Awareness Month gets too far underway, I wanted to highlight a few activities that will be taking place to educate, encourage, and raise funds for research. I realize that budgets can get stretched and energy sapped easily by too much involvement in volunteerism for any cause, but given the numbers (at least 1.5 million people have lupus in the United States) and need (we’ve only had one new drug to treat this chronic, very serious illness in the past 50+ years), for more of a public face on lupus, we lupies hope that, at least, more people will be aware of what lupus is and how it affects the lives of those who have it and those who care about lupies.
Among the activities this month, the Lupus Foundation of America (www.lupus.org) will sponsor several walks in cities both large and small in the United States (you can go to their website for more information). LFA also has a Washington, D.C., advocacy day coming up in June, as well as ongoing support groups and other events throughout the year.
The Alliance for Lupus Research (www.lupusresearch.org) will also sponsor “real” walks, as well as a “virtual walk” (a nice accommodation for those of us with extreme sun-sensitivity). Their website also has good information on the disease and the state of current research, so we lupies can be well-equipped to talk with people about these.
The Lupus Research Institute (www.lupusresearchinstitute.org) has information about their events, as well as the research funding they give. There’s a link on their website to clinical trials, too, so that lupies can potentially be involved in the development of new treatments.
Often, when I speak with newly diagnosed people with lupus, I hear them express a need to get involved in the cause. Rather than “reinventing the wheel,” these motivated lupies and others can find very worthy, worthwhile activities with organizations that already have a track record of education, advocacy, and research support – and become part of the larger community of lupies and “caring others” who really want to make a difference.
Blessings for the day,