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2010 Top-Rated Nonprofit

Lupus Foundation of Greater Washington

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Nonprofit Overview

Causes: Health, Specifically Named Diseases

Mission: The Lupus Foundation of DC, Maryland and Virginia is dedicated to finding the causes of and cure for lupus and providing support and services to all people affected by lupus.

Geographic areas served: DC, MD, VA, WV

Programs: *LFGW hosts various educational workshops throughout the year. These include a full-day Symposium for patients, families and friends affected by lupus. We also run several Newly Diagnosed Patient Workshops throughout the year, and offer one topic Lupus Lectures when needed.

*LFGW offers printed materials that include information about the various types of lupus, its symptoms, and available treatments and medications.

*LFGW maintains a website that provides current information on lupus.

*LFGW maintains an up-to-date list of physicians in the Washington, Virginia, Maryland and West Virginia area that includes lists of the different types of Doctors that treat lupus patients.

*LFGW hosts regularly scheduled support groups that meet in various locations throughout the Greater Washington, DC area. An approved and trained counselor facilitates each support group.

*LFGW runs an E-mail buddy program. Many lupus patients can become isolated and housebound, so we administer a program to allow lupus patients to have an understanding and knowing person to communicate with from home, through email on everything from symptoms, to medications, to emotions and frustrations.

*The foundation makes presentations to different organizations including schools, and volunteer groups.

*LFGW provides support and services to individuals who contact us via the phone or the internet. We provide these individuals with information and advice, and we make them aware of additional resources that they could turn to.

*LFGW also delivers a quarterly newsletter that provides information on new drug treatments, changes in disability requirements and offerings, and a variety of other topics that impact those affected by lupus.

Community Stories

16 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

LFA-DMV has been a helpful resource in building a network of support for myself and others. The annual Walk to End Lupus Now is critical to educating the public and building awareness of the autoimmune disease Lupus that has taken many lives and impacts thousands more. I enjoy the materials and symposiums provided to continue the focus on better treatments for patients.

Review from Guidestar

6

Volunteer

Rating: 1

This organization is now known as Lupus Foundation of America-DC/MD/VA Chapter. Not sure where to begin with the cons of this chapter. Please note that the majority of reviews online at this site is written by either former or current staff or board members. To an outside bystander that should be your first red flag. As a former volunteer I have to say that I am very disappointed by organization. The disappointment hits you slowly. The staff tend to be nice people (although good luck in keeping up with who's who on the rotating positions) And their niceness sucks you in. But when you start to ask yourself what does this organization do? And did the stuff I worked on made a difference in the life of someone who has lupus? You start to figure it all out.....just about every single you do is related to fundraising!! And the other 5%? Awareness!
Awareness? What is awareness? You know the stuff that many organizations claim as part of their mission but what is awareness exactly? A competent organization would be able to answer this question effectively for you. Not LFA-DMV. Awareness at LFA-DMV is a warm gooey mess that suppose to make you feel are good inside about how you're helping people. Let's get real. LFA-DMV inflates the # of people it helps. On any given day at a typical support group you will find an avg of 3-5 people in attendance----on a good day. Yet LFA-DMV would have you believe that they are actively providing services for the 85,000 people living with lupus in the dc/md/va area. Umm LFA-DMV doesn't even have 85,000 people on their mailing list! (I know I worked on their databases and mailing lists) So you're probably thinking so what if the # is inflated. Nonprofits inflate the # of those served all the time. What you should find shocking is that the total # of people LFA-DMV DIRECTLY HELPS is less than 1,000! So the shock is that these people are so brazen in their lies! How does LFA-DMV justify the #s they provide? Well first they try to make you think they are somehow providing service to all those afflicted with lupus with the DC/MD/VA area. That’s where the 85,000 # comes from. The second way is through health fairs. The will count the # of people who attend a health fair as the # of people they provided awareness too. Think about that. Not the # of people who may come to their table to get information. Just the # of warm bodies who walks into the health fair. The third way they count is to use the # of participants at their walks as people who were provided awareness-(and thus their services….see how that works out? I won’t even go into how the # for walkers and participants are over inflated!!! I hope I been able to provide a peek behind the wizard’s curtain into the inner working of the LFA-DMV. Their CEO & President gets high praise. She’s also paid well over $120,000. For an organization who’s 2010 annual revenue was $636,414 seems a bit excessive to me. Like Wall Street excessive. I’m looking forward to seeing the 990 for 2011. Wonder what’s taking so long?

1

Volunteer

Rating: 1

I want to caution people about this organization now known as the Lupus Foundation of America-DC/MD/VA Chapter. This organization does a decent job in offering some programs for lupus patients- mainly support groups and educational workshops. However for an organization whose budget is over $700,000+ a year the programs doesn't reflect the money they raise.

It's a bit like seeing how sausage is made- once you do you're unlikely to like sausage. This group has nice friendly staff but trust me when I say donations are not properly managed or utilized. Money is wasted on a consistent basis.
Lupus patients need help for sure but for a better return on your donation consider giving to ALR- alliance for lupus research or LRI- lupus research institute or the S.L.E Foundation. (i'm not affiliated with these groups)

3

Former staff

Rating: 4

LFA-DMV works to give people living with lupus the tools and knowledge necessary to manage such a complex and potientially devastating disease. I appreciate that LFA-DMV continues to build upon their services and think of new ways to impact the people they serve.

4

Professional with expertise in this field

Rating: 5

My story begins in 1978 when I was asked to sit at the LFA booth in Springfield,PA mall at a health fair. Most of the people who stopped said things like, "you die from lupus, don't you?" At the time I thought there must be a way to let the public know more about those living with Lupus. Moving to Maryland in 1980, I had the opportunity to work with one of the best Lupus experts around, Dr. Mary Betty Stevens of Johns Hopkins Medical School. She was convinced that Lupus could be controlled in a more effective manner and the llast 30 years have proved her correct. Better and sooner diagnosis, more effective treatment, research and education have made it possible to say to health fair attendees now - "There is hope and you don't have to die with Lupus."

Review from Guidestar

4

Volunteer

Rating: 5

My husband was diagnosed with lupus in September 2008. I was the Booz Allen Hamilton team captain for the 2009 DC Lupus Walk. I was the DC Walk Co-Chair and the Booz Allen Hamilton team captain in 2010. I was also part of the aucton committee for the DC MD VA Chapter's 35th Anniversary Party.

Review from Guidestar

10

Volunteer

Rating: 5

This group is not only a great group of people serving the community but also their services are timely and relevant. They try very hard to offer information in a variety of ways to meet each individual's needs.

14

Volunteer

Rating: 5

LFAGW is a small but impactful organization that really puts support services first. They have a caring staff and motivated board of directors. I found them to be a pleasure to work with.

8

Volunteer

Rating: 5

I've volunteered for many organizations in the past and I have to say that the Greater Washington Chapter of the Lupus Foundation of America is far and away head and shoulders above the rest. From the moment that I entered the office until the last day that I volunteered, they were nothing if not courteous, warm and helpful.

11

Professional with expertise in this field

Rating: 5

As a health educator for the National Lupus Foundation of America, I have worked closely with the Greater Washington LFA chapter in finding resources for individuals with lupus and their families in the MD, DC and VA area. The response to the individual needs of the Greater Washington chapter to their constituents with lupus is tremendous. They are timely and accurate with their resources and education. The programs and individual services that the Greater Washington chapter provides has increased the knowledge, awareness and quality of life of those that reach out to them.

10

Volunteer

Rating: 5

3 years ago, a close friend was diagnosed with Lupus. As a college student, this was a very hard transition for her. We walked 3 years ago and helped start team "Kickin it for Krista". With the support of her family and friends, it is nice to see how much of an impact The Lupus Foundation has made on one individual. I will continue to support LFA and hope one day the money raised will help find a cure for this disease.

Review from Guidestar

7

Volunteer

Rating: 5

What is Lupus? How many people really understand this illness? Are health care providers ruling out everything else before settling on this diagnosis? It's been almost a year since my mother-in-law passed away. After reading her journals and seeing the various medical reports, it is very possible that she could have been suffering with Lupus. Unfortunately, her health care providers may not have come to this conclusion in time. Organizations like the LFA-DC/MD/VA raise awareness that is vital to providers helping their patients, and for patients to help themselves. It also provides crucial support to family members who are, essentially, living with the disease as well. This organization has a wonderful support base, but deserves this health award to spread their good work even further.

Review from Guidestar

7

Board Member

Rating: 5

The Lupus Foundation of DC MD VA (LFA-DMV)is literally a life saver! the mission and purpose of the Foundation is to provide education and patient services to individuals with lupus--an incurable auto-immune disease. As there is no cure for the disease it is essential that patients ar diagnosed as early as possible and learn quickly how to improve their quality of life. The foundation pulls together physicians, families, government resources,and researchers and provides FREE support groups, workshops, symposia, web chats and patient navigator services to help patients live longer with this diabilitating disease. My sister's life has certainly been extended because of the information and guidance she has received through the foundation. Every day makes a difference.

Review from Guidestar

9

Board Member

Rating: 5

I am a professional in organization development. I joined the board because I saw the need of this small non-profit with such a big heart and mission. We provide services that postively impact the lives of people living with lupus - and all free of charge. I found a group of very committed people that need more resources so that they can do more. I have been thrilled and energized watching the organization triple the number of people served in the Greater Washington area. We have just changed our name to more accurately reflect how we have broadened our reach: LFA-DC/MD/VA.

Review from Guidestar

9

Volunteer

Rating: 5

I volunteer with this chapter because I am so impressed with the work they do with a limited budget and very small staff. They truly improve the quality of life for the many patients they serve. Their dedication and enthusiasm while maintaing very high standards of programing and work is a model that more nonporifts should strive for.

9 MissEdie

Volunteer

Rating: 5

I found out about the Lupus Foundation when I was faced with having to stop working after 20 years. I am a lupus patient and I have successfully managed to live well and control my lupus. I was feeling pretty useless, until I became a volunteer for the Lupus Foundation. I have attended many health fairs representing the Lupus Foundation; it has truly made a difference in my life. I feel as though I do have a real purpose. I spread lupus awareness and let the public know that the Lupus Foundation is all about, and they provide support for lupus patients, their families and friends. The workshops, the Lupus Walk, the Annual Lupus Symposium, NBC-4 Health Expo, the health fairs, the fundraising events, are all opportunities to reach out to the public, educating them, providing them with support, and helping to educate them about lupus, and teach them how to live a quality life while living with lupus. The support groups are amazing,and the group leaders are are very helpful and supportive. I am very fortunate and blessed to have learned about the Lupus Foundation when I did, it has enabled me to help other lupus patients, their families and friends. The staff at the lupus Foundation is unbelievable; they are very passionate about the work they do. Penny Fletcher, the President & CEO of the Greater Washington Chapter, is the reason we have our very own DC Walk for Lupus which she started in 2007, and has breathed life into the Greater Washington Chapter to make it what it is today.

Review from Guidestar