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June 28, 2010

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June 28, 2010

I have stayed up-to-date via the website and emails about Lupus. While I was informed that my childs chances of having Lupus were only slightly higher than the general public, it is good to be aware of signs and symptons. Her mother went undiagnosed for nearly 12 years because she would go in and out of remission.

The Great!

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

helping my daughter stay informed and she used the sight to write a term paper for school.

Ways to make it better...

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

hope they could get more recognition so more funds could be assigned/raised for the cause.

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

continuity in growth and information.

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

friendly and supportive.

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

do more public service announcements and raise more money for research. RECOGNITION and awareness needs to be heightened.

Ways to make it better...

they announced a cure AND a vaccination.

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

funds and recognition.

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

I hold great hope that this disease shall become obsolete in my lifetime. I have lost several friends far too early in their lives.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

The Lupus Foundation of Northern California saved my life. When these strange symptoms first appeared in 1996 I did not not know what was wrong with me. The doctors mentioned "could be Lupus"?? I went to this organization for information and support. They had up-to-date information, support groups, an informative newsletter, education, the doctor's hot line, and people with Lupus that you could speak with. I found them to be helpful and they where my link to answers about a disease I was unfamiliar with. Thank You, Debra Giusto

The Great!

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

Knowing how to care for myself and family. How to be independent and to know I can continue to work and have Lupus.

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 27, 2010

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June 27, 2010

I first got involved with this foudation when my rheumatologist was working for it. The information NCLF gave to me helped me to understand the differences and similarities between lupus and rheumatoid arthritis. They consistently provide a wide range of info, services and connections to the local and medical commmunities in the Bay Area. I feel very fortunate to know about, and benefit from, such a productive and helpful organization.

The Great!

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

NCLF helped me to understand my situation as a twenty year old with a severe auto-immune disease which some thought was Lupus and others thought was RA. The personal attention given to me was a great comfort and relief at that beginning stage of my disea

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2009

June 27, 2010

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June 27, 2010

The Lupus Foundation of Northern California does so much to help people with lupus and their loved ones live with the disease. Their programs and information are invaluable. This is an invisible disease and so easy for the uninformed to misconstrue. We need more education for the public and the LFNC does that.

The Great!

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

Education of the public and myself.

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 27, 2010

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June 27, 2010

For six years I saw the Lupus Foundation help lupus patients by assuring that current and pertinent information was available. With a clear focus on education and promoting awareness, the Foundation helps patients to find their way with a disease so often mis-diagnosed or overlooked. By conducting conferences with medical experts; producing and circulating literature and newsletters; maintaining a web-site with current information; monitoring the latest lupus research; and working with national research organizations, the Foundation makes itself highly relevant to the lupus community.

The Great!

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

As a member of the board I have personally helped to assure the results of this organization and have personally viewed the results.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 27, 2010

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June 27, 2010

I contacted the Lupus Foundation of Northern California when I was diagnosed with lupus. I was able to attend a patient education class where my fears about living with lupus were calmed. I received encouragement and very practical information of how to take care of myself. I continue to be a member of the foundation because they keep me informed on the latest research on lupus and provide seminars/classes with credible professionals on such topics as diet and exercise, social security disability, emotional issues of a chronic illness and more.

The Great!

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

information about lupus and living with the disease and the side effects of medication I take or have taken. I receive encouragement to live an active life and take care of myself and to give back by supporting others with lupus.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

I came to Bakersfield chapter of Bay Area Lupus Group (as it was known then)for support of my own health, emotional and family issues. I had an autoimmune disease similar to lupus, so the meeting had information helpful to me (on oral lesions, joint pain, fatigue, sun exposure worsening disease). The Bakersfield group got much of their information from the Bay Area Lupus Group (now Lupus Foundation of Northern California), especially on how one person's disease stressed the whole family. It takes strength to speak up for one's needs when the family needs the sick person NOT to have those needs. The Lupus Foundation of Northern California led the Bakersfield Lupus Support Group to encourage members to be honest about their emotional needs with their families. The Lupus Foundation of Northern California (then Bay Area Lupus Foundation) also led training for chapter officers. My training through BALF made a huge difference in my ability to organize in different groups later in my life, and I am grateful.

The Great!

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

Meeting needs for info on disease & emotional & family aspects of it for patients; training for officers of local support groups that provide info to patients in different areas; exciting fund-raising the Foundation does semi-annually+

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

I found out I had Lupus about 20 years ago and the LFNC has been a great resource for me over the years with information and support. I have volunteered for them and been part of their fund raising efforts through the years. It has been important to me to have a place I can go to that understands what I am going through. LFNC is a great organization!

The Great!

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

I have been part of their Lupus walks, evening fund raisers, health fairs and they have always been a pleasure to work with and be part of their events.

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

After being diagnosed with lupus, I researched the condition extensively. But nothing could have prepared me for the emotional ramifications and challenging logistics that come with a chronic condition. LFNC helps me conserve my dwindling energy by providing summaries on the latest research, notification of studies and the backbone to local support groups and educational seminars. My first time attending a support group was invaluable, I finally met people "like me", not just by condition but by ambition as well. This was both heartening and discouraging and scary but it was important for me to see and understand the realities of creating a new lifestyle in which I can still be fulfilled. It is all a work in progress, and I know that the Lupus Foundation of Northern California is there if I need guidance / information.

The Great!

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

meetings, newsletters, educational seminars

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

When I was first diagnosed with Lupus, the rheumatologist I was going to did not provide me with any support or information. He even walked out of the exam room while I was asking him questions. I was frightened and had no idea what I was up against. The Lupus Foundation of Northern California provided me with the support and the information I was not receiving from that doctor. Through their education seminars and information pamphlets, I learned so much about my disease. I was relieved to know I was not alone and even more relieved to know my life was not over. The LFNC gave me the strength to assert myself and demand that I be a member of my medical team. Needless to say, I fired my first rheumatologist. I am very happy with my current doctor. I honestly believe I would not be doing as well as I am, had my sister not found the LFNC for me.

The Great!

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

Through their seminars and information pamphlets, I have received the support and information I need to help me battle this disease.

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

the understanding I receive. I have never gotten the common "But you don't llok sick" comment, which so often occurs when people know nothing about lupus.

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

kind, genuine and supportive. They are always curteous and have smiles on their faces, even when you can tell it's hectic in the office. They are all pationate aabout this cause.

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

spread the word about lupus and provide support for so many more patients. It's sad that lupus affects so many, but is known to so few.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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