April 11, 2013

Getting Help is Closer Than You Think

by Christine John-Fuller, President and CEO of the Lupus Foundation of America North Carolina Chapter

Christine John-Fuller (right) with volunteer Tameka Joyner at the 2011 NC Lupus Summit
The Lupus Foundation of America has an ambitious goal: Improve the quality of life for all people affected by lupus. The cruel mystery of lupus does not daunt us. Our role is to help everyone with lupus be informed, engaged, and hopeful. We work to improve the lives of all people affected by lupus.

For those that don’t know, I have the greatest job on the planet as the President & CEO of the Lupus Foundation of America, North Carolina Chapter. Currently, I am finishing the last leg of an eight-city NC Lupus Town Hall Tour. In every city we’ve held a meeting, one comment from the audiences keeps getting voiced, “Please tell me about the support available to me here in my area.” And after more than two years of work towards expanding to a statewide chapter, I’m excited to share with them all we have to offer and can do to help. This list is extensive and many times they respond in surprise not realizing all the ways we can offer hope and help.

But this question is not unique to North Carolina, it is the same question that individuals affected by lupus ask across our country. And too many times, those who need help the most don’t truly understand how we can help. So allow me to break it down for you.

We not only fund research – we serve those living with lupus NOW.
In our pursuit of solving the cruel mystery of lupus with better treatment options and ultimately a cure, we also know that we have people who are confronted every day by lupus’ brutal impact, and we are the only national force devoted to doing so.

Regardless of where you live, we are here to help you.
No matter where you live in the United States, there are services established to help you. The Lupus Foundation of America National Network is composed of chapters, offices, and support groups in communities throughout the United States. But don’t make the assumption that too many individuals make. Just because there isn’t a physical office in your hometown, doesn’t mean there isn’t help out there for you. Think of it this way, could we possibly even afford to have an office in every town across America, OR would you rather we pool our resources so we can offer more services to more people, like you, that need help? Our network provides information and programs to ensure people with lupus and their families get answers. I encourage you to contact your closest chapter today to see what they may offer in your area.

No office close to you? No problem.
Did you know we have National Health Educators that are here to serve you? If you don’t have a local office, the Lupus Foundation of America Health Educators are available to take your call and help with whatever your need may be.

We are on this journey with you.
From discovery of symptoms to diagnosis to managing life with a chronic disease like lupus, we are on this journey with you. We know that lupus affects more than just the physical, it can have emotional, relational, and financial implications as well. We want to be the fourth cornerstone in the foundation of your support, with the other three being you, your healthcare team, and your caretaking team. Together, you are better equipped to handle anything that may encounter along the road…no matter whether yours is a rural dirt road in NC or a bustling metropolitan boulevard. We’re always here to be your traveling partner.


Anonymous said...

You are joking, right? Help is closer than I think? I have lost count of the number of times I have written to the "foundation" for assistance on starting even ONE support group in my area, or how to begin a foundation in my state. I moved from a state who had what seemed like limitless support, to one with virtually nothing. Online support is great, but nothing like holding the hand of someone who is newly diagnosed. I have lived with SLE for over 30 years, and I would love to be able to give back to the community. I just have no clue how to begin when there are no resources presented. Perhaps I am overzealous, but I will continue to do what I can for my sisters and brothers of the wolf.

Anonymous said...

If you want to establish resources, you have to stop being anonymous!!!

Joy Ali said...

The LFA NC chapter is amazing. I have never once been ignored when having needs or questions and the President and staff have ALWAYS made themselves personally available to help me. Ican't imagine fighting lupus without them.