Lupus Foundation of Greater Washington

Rating: 4.25 stars   16 reviews

Issues: Health, Cancer

Location: 2000 L St, NW Suite 732 Washington DC 20036 USA

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.

2010 Top-Rated Nonprofit
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Community Reviews

Rating: 1 stars  

4 people found this review helpful

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?

Would you volunteer for this group again?

No

For the time you spent, how much of an impact did you feel your work or activity had?

None

Did the organization use your time wisely?

Badly

Would you recommend this group to a friend?

No

When was your last experience with this nonprofit?

2011

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Rating: 2 stars  

1 person found this review helpful

There appears to be a lot of turnover at this organization which is disconcerting. The only long serving person is the CEO- the staff that works directly with patients seem to come and go. Makes you wonder what is going on

I've personally experienced the results of this organization in...

Yes

If I had to make changes to this organization, I would...

I would like to see some diversity of staff at this organization. lupus affects women and women of color disproportionately. It would be nice to see women of color in significant roles here and at the National level.

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We believe LFA-DC/MD/VA does well at staff retention. Of our 6 employees (4 FT / 2 PT), our CEO has been with us almost 5 years, Director of Patient Services 3 years, and both the Volunteer Coordinator and Patient Navigator 2 years. Unfortunately, we don’t recognize Lucy’s name, but she gives us an opportunity to tell about our great intern program. 3 times a year, we get a new group of 3 – 5 interns who do wonderful projects with us for 2 – 3 months. Those new faces could be perceived as turnovers, but we are strengthened by their energy and talent, and they leave us as lifelong lupus advocates.

Rating: 1 stars  

1 person found this review helpful

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)

I've personally experienced the results of this organization in...

DC-MD-VA. For the handful of people that attend the support groups the help is appreciated. Most people are helped via podcast and teleseminars on line. How much money is needed for that?

If I had to make changes to this organization, I would...

offer patients technical assistance with their lupus. Help them connect the dots to resources in their area. Offer programs other than workshops. Expand presence in MD and VA.

Would you volunteer for this group again?

Unlikely

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Did the organization use your time wisely?

Somewhat badly

Would you recommend this group to a friend?

Unlikely

What one change could this group make that would improve your volunteer experience?

improve communication throughout the process.

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Rating: 4 stars  

3 people found this review helpful

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.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

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Role: Professional with expertise in this field
Rating: 5 stars  

4 people found this review helpful

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."

I've personally experienced the results of this organization in...

Donations to the organization have greatly increased and the public awareness campaigns have been responsible in large part to this success.

If I had to make changes to this organization, I would...

Increase direct support to patients with SLE.

What I've enjoyed the most about my experience with this nonprofit is...

Meeting the great volunteers as we serve our population.

The kinds of staff and volunteers that I met were...

Kind and passionate about helping those with Lupus receive education, personal grants, and support (groups and 1:1 conversations.

If this organization had 10 million bucks, it could...

Help with research to solve the problem of cause and eventually cure for SLE

Ways to make it better...

We had more of those volunteers.

In my opinion, the biggest challenges facing this organization are...

Getting more people informed about this "orphan" disease. 1 - 2 million have SLE and very few 'regular' folks know this.

One thing I'd also say is that...

I have been blessed by many people in my years with the organization. Seeing compassion with patients helps one believe in people and their goodness.

When was your last experience with this nonprofit?

2010-7-01

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Review from Guidestar
Rating: 5 stars  

4 people found this review helpful

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.

I've personally experienced the results of this organization in...

The Lupus Foundation DC MD VA Chapter has given my husband and I a wealth of information about the disease and how to manage life with this incurable chronic condition. It has also provided a way for us to meet others who are struggling with this disease

What I've enjoyed the most about my experience with this nonprofit is...

I've learned more about lupus and how to manage it throughout my life. It's a great way to get info outside of a doctor's office. For those with limited access to doctors, it is an invaluable resource.

The kinds of staff and volunteers that I met were...

Hard-working, dedicated, running many projects at the same time. I'm amazed at how many things the staff takes on in the interest of people who are impacted by lupus.

If this organization had 10 million bucks, it could...

Cure lupus and improve the lives of millions who are suffering.

When was your last experience with this nonprofit?

2010-6-01

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Review from Guidestar
Rating: 5 stars  

10 people found this review helpful

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.

I've personally experienced the results of this organization in...

their excellent patient information

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

14 people found this review helpful

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.

I've personally experienced the results of this organization in...

educating the public about lupus.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

8 people found this review helpful

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.

I've personally experienced the results of this organization in...

the support that they give to Lupus patients in the DC Metro area.

If I had to make changes to this organization, I would...

Upgrades to their hardware ie, their server and newer PCs.

What I've enjoyed the most about my experience with this nonprofit is...

The ability to educated and aid Lupus patients.

The kinds of staff and volunteers that I met were...

Warm and courteous.

If this organization had 10 million bucks, it could...

make a lasting and profound impact on DC, MD and VA.

Ways to make it better...

the hardware was upgraded.

In my opinion, the biggest challenges facing this organization are...

The lack of funds for a better server and PCs.

One thing I'd also say is that...

For starters, they could use the money to buy better equipment to help them help others.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010-6-01

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Role: Professional with expertise in this field
Rating: 5 stars  

11 people found this review helpful

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.

I've personally experienced the results of this organization in...

Helping individuals with lupus locate needed resources whether educational, support group, finding a physician and financial resources. They always go the extra mile.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

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