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Lupus Foundation of America, Inc.

Rating: 1.29 stars   7 reviews 1,164

Address:

2000 L St N.W. Ste 410 Washington DC 20036 USA

Mission:

The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus.

Programs:

Public information and education: the foundation continues to increase awareness and understanding of lupus and its impact on health through public awareness campaigns, media relations, online and social marketing and aggressive outreach efforts to corporate and community partners. This year, the foundation's website, lupus. Org, exceeded six million visits, meeting a growing demand for information about lupus. In addition, with more than 235,000 likes on facebook and 24,000 followers on twitter, the organization has the largest social media presence dedicated exclusively to lupus. The foundation continued to see tremendous growth and interest in signature awareness campaign activities during may-lupus awareness month. During that month alone, the foundation secured 36 media stories, generating more than 15 million television impressions. Story placements included cnn, huffington post live and costco magazine. Visits to lupus. Org increased by 5 percent compared to the previous year, and, over the course of the month, more than 23 million facebook impressions were generated. In addition to these important strategic initiatives, the foundation continued to engage celebrities to support the cause and enhance the foundation's ongoing communications programs and signature events.

research: the foundation's national research program continues to attack problems that, for decades, have plagued the acceleration of lupus research and understanding of the disease. The foundation aggressively pursues strategies to increase federal, state and industry support for robust medical research efforts, facilitates strategic collaborations to address issues that are critical to progress, and provides greatly needed direct financial support to researchers through its privately-supported, peer-reviewed research grant programs, supporting scientists who are seeking a cure for lupus. Since 2009, the foundation has been implementing specific initiatives to tackle barriers to new, safe, effective and tolerable treatments for lupus. In that effort, the foundation has created an online portal that trains health professionals on instruments used in clinical studies and has spearheaded an effort to create a new, simplified instrument to assess disease activity in the clinic and in clinical trials. In 2014, the lupus foundation of america partnered with the foundation for the national institutes of health (fnih) to support a new five-year initiative that will accelerate the ability to develop new medicines for lupus and other diverse and complex diseases. The foundation continues work on a project to pool clinical trial data (de-identified) provided by participating biopharma companies. This project continues to grow each year. Findings were presented at major scientific meetings of medical organizations and federal agencies. In 2014, the foundation launched lupus science & medicine. Owned by the foundation and published by bmj, a respected global provider of evidence-based medical knowledge, lupus science & medicine is a peer-reviewed, open access, online journal that provides a central point for publication of basic, clinical, translational and epidemiological studies of all aspects of lupus and related diseases. It is the first lupus-specific open access journal in the world and was developed in response to the need for a barrier-free forum for publication of ground-breaking studies in lupus. In 2014, the foundation provided new funding to award research grants that address issues of critical importance for people with lupus, including expanding our understanding of pediatric lupus, specifically in the area of pediatric lupus nephritis biomarker research, as well as through a new mechanism called lifeline. The lifeline grant was established in response to the current lupus research funding environment and the potential decline in scientific momentum and loss of current and future lupus investigators. The foundation also awarded summer fellowships to students, launched and awarded the second lupus insight prize in partnership with two other lupus organizations, and for the second year, bestowed its career development award. The foundation also supported research through its advocacy efforts. These efforts led to the following accomplishments: - secured an additional $5. 5 million, for a total of $32 million, to support the national lupus patient registry conducted through the centers for disease control and prevention (cdc), becoming the largest-ever lupus research study. - successfully advocated for the continued support of lupus research through the department of defense (dod) peer-reviewed medical research program, which in 2014 awarded three lupus research grants totaling $3. 4 million. To date, the dod has provided $17. 4 million for lupus research, including funds for a study that led to the development of the first diagnostic test to help physicians determine a diagnosis of lupus. - secured an additional $2 million, for a total of $6 million, for the lupus initiative, which launched in 2013 to train more doctors on recognizing the signs and symptoms of lupus and to facilitate earlier diagnosis.

network support and services: the foundation provides capacity-building services, strategic support and on-site consultation to its network of chapter affiliates, field offices, support groups, and other interested partners to serve the needs of lupus communities across the united states. In 2014, the foundation provided on-going organizational development support and training to chapter ceos, staff and board members, including individualized capacity-building services, leadership of national advocacy activities (as well as training for state advocacy initiatives), leadership development through our leadership institute and specialized trainings for support group facilitators. A new program was developed to train qualified individuals to become support group facilitator trainers, to increase the foundation's capacity to provide this important service across the network. In 2014, 19 new trainers were certified through this program. The foundation also provided tools and materials to aid the foundation's 21 chapters and more than 267 support groups, serving hundreds of thousands of people across the united states. The foundation continued to provide on-site and remote interim executive leadership support for chapters that experienced a ceo transition, including providing leadership throughout the search process. Additionally, in 2014, the lupus foundation of america walk to end lupus now events brought together nearly 70,000 individuals in 60 cities across the nation to learn more about living with lupus, to increase awareness of the disease and to raise funds for the cause in their local communities.

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More Info

(202) 349-1155
www.lupus.org

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Reviews for Lupus Foundation of America, Inc.

Rating: 1 stars  

2 people found this review helpful

I contact the Lupus Foundation's national office to get help for my wife. After a few years of trying to figure out what is wrong with her (painful joints and all), she was diagnosed with Lupus. We'd never heard about it before and the Doctor's office suggested we contact Lupus. We did.

We got nothing from them. They did suggest we read their website as 'all the information you need is there'. Given my wife's other complications, we were hoping for something more than 'search the internet' for help. My wife cried when she heard this advice. She's been in pain for quite a while and this struck us like a doctor saying: take 2 aspirin and call me in the morning.

Disappointed.

 
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Rating: 1 stars  

1 person found this review helpful

Sadly, the Lupus Foundation of America ranks among the worst non-profit organizations in the US. The leadership cares less about helping those with Lupus and their families and is entirely focused on their egos and appearances. They have become infatuated with metrics that are meaningless and fail to serve or help the public. Sad. And very sad for those suffering and enduring with Lupus

 
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Rating: 1 stars  

1 person found this review helpful

To the Better Business Bureau:

I am filing a formal letter of complaint with you regarding some of the employees in the Lupus Foundation of America, Pacific Northwest Division and their Headquarters.

At a time, I did want to donate money to the LFA and volunteer with their organization to help find a cure and create awareness for lupus. However, There is now no way anymore that I am donating to or helping the LFA to pay such lazy and incompetent CEOs, etc.,in the company, that don't listen to lupus patients and the public, and can't even pass on a simple message to contact me back about a lupus walk and public speaking inquiry that I placed. In addition, one of the CEO's slandered/defamed my name to other employees in the LFA.

This was the order of events:

Out of the entire 6-7 months of this year 2014, I have spoken to Celia Weismann, the CEO of the Pacific Northwest Chapter, only twice.

In winter of 2014, While we were discussing the potential fundraiser, I called and left a message for them to call me back to let them know that I would no longer do the fundraiser and provide them the valid reasons why. They never did call back, and I was still going to talk to them about walks and public speaking.

Months later, On June 19, 2014, I got around to put in another phone call to Ms. Weismann to follow up all the way from winter, since she chose never to communicate. Although I told her that I decided not to do the fundraiser with her, I did inquire to her about public speaking and participating in a lupus walk. She told me that 'they are always looking for speakers", and that she 'would have someone contact me from the Los Angeles area." As I patiently waited to hear back for those two things, the LFA had still not gotten back to me.

I followed up a week later again to Ms. Weisman, since I still didn't hear back from her. Ms. Weismann then sent an email to Jeanna Cullinan, Allie Kunzig, Kimberly Sandhu, slandering my name in the email.

Jeanne Cullinan then finally emailed me after all of the above went on, and told me that a "Laurie Gray" would be contacting me.

Still, no one contacted me.

Clearly, the attitudes of some of these individuals in the LFA need to change for the better, along with their listening skills and professionalism, at the very least.

Such undesirable attitudes and behaviors are exactly what drive people away from wanting to volunteer and help the organization and give money to the LFA. Furthermore, such bad attitudes, inefficient communication, and just plain rudeness, are also big reasons for why the LFA continues to be underfunded.
Such individuals in the LFA are halting the goal of finding a cure for lupus. This is just bad business.

They want the money and hard labor from people outside the LFA, but they don't want to do their side of the work for it.

Obviously, I have no desire anymore to help this organization. I will no longer become a member of the LFA, nor will I volunteer my time anymore with them, as I was planning on before. I will also be letting the communities know that they should not support the LFA due to their unprofessional ism, unwillingness to provide proper support for raising funds to find a cure, and laziness in not wanting to do their end in helping raise enough money for finding a cure.

These individuals in the LFA need to ask themselves why they get periodic complaints all the time. They are the ones responsible for communicating effectively to the public and truly helping find a cure. They need to be held more accountable.

My number is below if you have any further questions. I do have further evidence of the libel, slander, and defamation of character, upon request.

Best regards,



Side note: In addition to the above, the BBB might want to take this up further with the LFA's HR department as I have received
anonymous complaints and cries out for help.

It appears that the people in management positions are not letting their employees know of people who they can contact that handle complaints objectively.

DOESN'T the LFA have a human resource department???

I've heard possible racist issues, sexist issues, mild harassment cases going on, etc.

My recommendation is that HR talk to *all* and EACH of the employees of the Pacific Northwest chapter and the LFA Headquarters, not limited to those chapters, so that everyone gets heard.

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

Hire better CEOs and managers

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?

2014

 
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Review from Guidestar
Role: General Member of the Public
Rating: 1 stars  

I have asked this charity not to call me and take me off their phone list at least a dozen times. They don't want to do this. I will never donate to this charity.

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

Stop calling when they are requested to do so.

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2014

 
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Review from Guidestar
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Role: General Member of the Public
Rating: 1 stars  

I have received numerous calls from this charity. And, depsite asking them to remove my name & phone number from their calling list, I still receive calls. I work from home and this is extremely disruptive andannoying.

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

A little

When was your last experience with this nonprofit?

2012

 
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Review from CharityNavigator
Rating: 2 stars  

I donated for my cousin but got on their mailing list. I hate it when you donate to an organization and then they start sending you glossy magazines and spending money to get you to donate more. Why a glossy magazine? I donated without them asking and resent that they are after me for more money. I left of VM to get me off their list completely - we'll see if it works.

Was your donation impactful?

Unlikely

How likely is it that you would recommend that a friend donate to this group?

Unsure

How likely are you to donate to this group again?

No

When was your last experience with this nonprofit?

2011

 
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Review from CharityNavigator
Role: General Member of the Public
Rating: 2 stars  

1 person found this review helpful

Foundations. Charities. They do great things and need donors, of which, I often donate to charities of my choice based on that charities mission and fiscal responsibility. What I don't want is for an organization, this one, calling my home phone a few times per week while I am at work and letting the voice mail system go to the point of recording, just for them to hang up immediately. Now I am coming home everyday picking up the phone to wait for the prompt, entering my password, and finally deleting a half second message. If their mission is to pester individuals into donating by making multiple calls per week, then I want no part in it.

Will you volunteer or donate to this organization?

Unlikely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

 
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Review from Guidestar