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June 29, 2010

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June 29, 2010

After years of strange symptoms that would come and go, I remember sitting in my doctors office being told that "you don't want to have lupus". I was then refered to see a rheumatlolgist, which took a few months to get an appointment. Knowing nothing about lupus I went to the public library and the only book I found was outdated and I read I had only 10 years to live! Somehow I found out that there was a Lupus Foundation ongoing support group in my city. I found out that lupus was not a death sentence and that I could take action to be as healthy as possible. I become more educated about lupus, suppported, and became a member of Lupus Foundation. I continue to receive valuable info from their website that keeps me up to date on research and medication and offers me hope that soon there may more curing medication for people with lupus.

The Great!

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

Because of my involvment with Lupus Foundation, I now have the knowledge/tools to handle what my living with lupus brings me. The articles and support group also helped my family gain an understanding of what I am going through and how they can help me.

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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 29, 2010

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June 29, 2010

I am a rheumatologist in the San Francisco Bay Area and have worked with the LFNC since I was a fellow in 1986. Initially, I only used the organization to refer my patients for informative materials and support groups. Later when I became a faculty member at Stanford, I became a speaker for the annual Lupus meeting for many years. For more than a decade that I have been in private practice, I have been a reviewer of articles for the news magazine. The LFNC chapter has been a tremendous resource for my patients and I refer my lupus patients to the organization routinely. R. Elaine Lambert, M.D. Overall rating above expectations

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

see above

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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 29, 2010

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June 29, 2010

Lupus Foundation of Northern California (LFNC) has been instrumental in my avoiding many of the hidden dangers of Lupus SLE. When I was initially diagnosed with Lupus Cerebritis (of the brain) in 1997 there was so little knownledge base for the Lupus patient with this particularly aggressive and most often deadly form of Lupus. LFNC directed me to support groups in my area, allowed me to borrow from their extensive video library, spoke with me about my particular manifestations of Lupus and in general gave me caring and compassionate service in many different ways. I also learned so much about how to care for myself and to help my caretakers know what to look for when I am getting sick. I am alive today because of the "MANY" doctors, caretakers and organizations who continue to make progress in all areas of Lupus and LFNC has been a huge part of that. As I have now added to my list of organs affected; my kidneys, liver, spleen, lungs, heart and more...the more I know the more I can fight this with confidence I am doing all I can.

The Great!

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

My continued health improvement and knowledge of Lupus Clinical Studies that they have educated me about that I have participated in...

Ways to make it better...

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

Find a way to help them raise more money for research and broader education...

More feedback...

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

The continued education about the trickier aspects of Lupus...

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

Caring, compassionate and knowledgeable. They always have additional input to add and are very supportive even when you feel you are falling apart.

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

They could raise more awareness of the disease and reach people who have not even heard of the disease and are living with Lupus and are undiagnosed.

Ways to make it better...

Not sure if I could think of areas to make it better...they have been great

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

The economy, funding for continued education and a broader reach for people who have not even heard of the disease and are living undiagnosed...

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

Thank you for 14 years uf unparalleled support of people living with Lupus and those who support those of us living with Lupus.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 28, 2010
1 person found this review helpful

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June 28, 2010
1 person found this review helpful

In 1997 while I was on extended business travel I had my first Lupus attack and was taken to John Hopkins Hospital in Baltimore. I was experiencing severe swelling, rashes and massive pain to the point that I could not move on my own. The doctors at the hospital had no idea what I had but treated me and told me to see a doctor specializing in Rheumatology once I was back in the Bay Area. I did and it was as if he was giving me a death sentence by only saying how sorry he was that I had this terrible disease. My husband found out about this organization and bought me a lifetime membership. The information that I found from this organization helped me to learn how to control the symptoms and what to do to live a somewhat normal life again. Through the articles and the comments from other patients I have learned more than I have from any doctor that I have worked with. Lupus still comes to visit me from time to time but I have found that through exercise, eating right and making other changes in my lifestyle that I can keep the "flares" down to a minimum and live with this disease. This organization taught me never to give up and allow Lupus to win. I cannot thank you enough!! You have changed my life forever!!

The Great!

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

Attending events, running in their races, reading their newsletters both online and in hard copy, reading articles on their website and donating to their cause.

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

The extensive learning library and online resources to learn about the illness and to connect with others that have the illness.

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

all have been outstanding!!

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

Raise awareness globally about Lupus and help more patients learn how to control the illness and lead healthier and happier 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

I was diagnosed with SLE 33 years ago. At that time the prognosis was very poor. Shortly after being diagnosed and starting prednisone, I became pregnant. In my fifth month of pregnancy I went into full blown eclampsia with grand mal seizures, kidney involvement (spilling 8 grams of protein) and fetal demise. An emergency c-section was performed and after suture removal I suffered wound separation and remained in the hospital for 3 weeks. After all this we were advised not to try another pregnancy. During these past years my lupus has not been in remission and I remain on varying doses of prednisone supplimented with chemotherpy drugs when needed. Lupus has been a true challenge in my life but I am grateful to have a supportive husband and frequent times when my symptoms are mild. I have learned to deal with all this by taking one day at a time and knowing that my condition could be a lot worse. I am grateful to the Lupus Foundation of Northern California for providing information on current studies and treatments and for educatiing the public on this debilitating disease.

The Great!

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

Look forward to receiving news thru e-mail

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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 28, 2010

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June 28, 2010

My sister was diagnosed with Lupus 5 years ago after fighting for her life for 2 weeks. The doctors had no idea what was wrong with her. All they knew was she was dying and they didn't know why. After she was diagnosed, she had learn about Lupus and what she needed to do to keep it under control. Lupus isn't well known, so I am so grateful for The Lupus Foundation and their efforts to provide information, programs, education and services for those effected by Lupus and to help promote Lupus awareness. It was so great to see the number of people who came out to participate or support participates in the 5K Lupus Run/Walk.

The Great!

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

seeing the support it provides by sister and the spreading the awareness of 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 28, 2010

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June 28, 2010

I was diagnosed with Lupus in 1986 after I had given birth to my 3rd child. Back then not too many people, including myself, had heard of the disease. Through much research I came across the Lupus Foundation of Northern California which I soon discovered had so much to offer in the form of library materials relating to all aspects of Lupus, medical referral lists and a live person to answer the phone when I had a question. These are just some of the wonderful things the foundation provides. Also, the LFNC has continually updating me with the latest Lupus progress through e-mails or newsletters. I especially find value in the Lupus Conferences that I attend annually. At the conferences things are discussed that only a lupus patient could related to. I’d always walk away from those events feeling positive and with hope that something is being done to find a cure for this disease. With Hope, Sophia Lin

Photos

The Great!

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

volunteering, benefitting from emails and newletters

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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 28, 2010

more

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.

More feedback...

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

more

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

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