It's May - that means - Happy Lupus Awareness Month!
It was my pleasure to interview Beverly Goodell of the Lupus Foundation of New England (LFNE). I have known Beverly since 2017 when we began working together to coordinate the annual Lupus Medical & Educational Symposium co-hosted by LFNE and UMass. She has developed a wonderful new online interactive resource for lupus patients in collaboration with Marisa Zeppieri-Caruana that will debut May 19, 2020 called TILLY - The Interactive Lupus Link for You.
1. How did you end up at the Lupus Foundation of New England?
The Lupus Foundation of New England was founded in 1974, by Henrietta Aladjem and Dr. Peter Schur. I joined the Foundation in 2003 as a part time special events coordinator. I was familiar with lupus because my mother’s best friend, Nan, was battling lupus. She was my inspiration for pursuing my career at the Foundation. As the years passed, I became more involved in all aspects of the Foundation and found a deep interest in educating others about lupus and spreading awareness. I have formed some lasting friendships and met some incredible medical and research professionals, all with the same goal of finding a cure.
2. What are your goals, personally and professionally, for LFNE?
My goal for the Foundation is to be the first choice of reference for those in NE touched by lupus. Patients and their families need a place to go to for information and support. We are working to be their resource and give them hope that researchers and doctors are committed to keeping them healthy until we have better treatments and ultimately a cure.
3. What is one thing you wish everyone knew about lupus?
You don’t have to “look” sick to be sick! It is not all in your head.
4. What do you think is the future of lupus?
I think that there is hope on the horizon. I think that the medical, research and pharmaceutical industry will make great progress as long as they continue to work to together and focus on the patient and their symptoms. Communication is key to progress.
5. Any parting wisdom for people interested in lupus advocacy/outreach?
Join us for our walks, medical symposiums and now our virtual series TILLY-The Lupus Interactive Link for You. We are a family of support and guidance when battling this disease. We are here to help you live well with lupus!
You can follow LFNE on Twitter at @LupusNE or us @UMassLupus
