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Lupus Foundation of Northern California

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Nonprofit Overview

Causes: Health, Health Support, Nerve, Muscle & Bone Diseases, Specifically Named Diseases

Mission: Since 1978, with a mission to improve lives impacted by lupus, the Lupus Foundation of Northern California has served the California lupus community. We continue to pursue our mission of being a key provider of support services, educational programs, advocacy and information to empower lupus patients, their loved ones, and their care teams.

Results: Dedicated to serving an ethnically and economically diverse population and to providing the widest possible access to services, the Lupus Foundation of Northern California offers programs designed to meet both social and educational needs of patients and their families in English and Spanish, both in-person and online. Focused on those living with lupus as well as on research and advocacy to find a cure, we are proud to be the voice of the California lupus community of patients, families, friends and caregivers. Our first in the nation Lupus Buddy Program currently supports over 260 peers with lupus, we have over 20 support groups throughout California supporting lupus patients, and sub-groups for youth, Spanish speakers, people with chronic autoimmune conditions in addition to lupus, and our advocacy efforts contribute to real change, with efforts that began 10 years ago in 2011, contributing to new treatments for lupus. We continue to grow our programs, services, and advocacy in a virtual environment in 2021, and to help even more patients and families affected by this debilitating disease. The Lupus Foundation of Northern California was founded as the Bay Area Lupus Foundation in 1978 by Jo Dewhirst. Jo was elected to be the first Chairperson of the Board and served in this position from 1978-1982. She was hired by the Board to be the first Executive Director of the Foundation and held this position from 1982-2009. Lon Saavedra, the current Executive Director has served in this role since 2018.

Target demographics: people impacted adversely by lupus and chronic autoimmune conditions

Geographic areas served: California

Programs: support services and groups, wellness programs, educational resources and events, and advocacy for research and awareness.

Community Stories

154 Stories from Volunteers, Donors & Supporters

3

Volunteer

Rating: 5

I have been part of the LFNC for the last 4 years. I was diagnosed 3 years ago and me and my family reached out to the LFNC for some support. We started volunteering at the 5k run each year and the other activities that the LFNC holds each year. My sister and I started helping the Lupus Youth Support Group for those who have lupus from the age of 6 to 17 who need support because they are dealing with Lupus. The LFNC has helped me along the way of my time having Lupus.

Client Served

Rating: 5

I was diagnosed with lupus in 2006 at the age of 35 and felt truly lost in the dark. As I began coping with the illness, I discovered the LFNC, and from reading the articles and personal stories, I began feeling a sense of support and community, without even meeting anyone in person. I signed up for the annual lupus walk with my family of 12, and was completely inspired by all the other members walking. I continue to receive the email newsletter from LFNC and look forward to reading the latest news about lupus. I have also recommended LFNC to a friend recently diagnosed with lupus.

debeke

Client Served

Rating: 5

I was diagnosed with Lupus in 1986. Through the Lupus Foundation I have learned much about what Lupus is and how to treat it. Most importantly for me has been the ongoing information on how to live my life to the fullest while dealing with the fatigue, pain and other symptoms of Lupus.

Previous Stories
6

Client Served

Rating: 5

I have used Lupus Foundation of Northern California a lot. When I was first diagnosed I ordered information from them and went to several lectures. Through a lecture I found a local support group. I got most of my information about lupus from this information and lectures. I still look forward to my newsletters and updates from LFNC. A very good foundation!

Client Served

Rating: 5

When first diagnosed with Lupus my Rheumatologist suggested I contact the LFNC for information and support. I did so, and attended a conference for those newly diagnosed with SLE. The conference was informative, and most important to me, I knew I was getting up to date and correct information. Now, over 20 years later, I am still a member and I continue to learn from the newsletters - the LFNC provides an invaluable service to patients and family. I would highly recommend teh LFNC to anyone who has SLE or any type of immune system disease.

Review from Guidestar

Client Served

Rating: 4

LFNC DOES A GREAT JOB OF GETTING THE INFORMATION OUT ABOUT LUPUS. MUCH OF THE GENERAL POPULATION DOES NOT KNOW MUCH ABOUT THIS PREVALENT DISEASE. THE NEWSLETTERS ARE INFORMATIVE AND ARE UP TO DATE WITH THE NEWEST INFORMATION ON PERTINENT RESEARCH AND NEW DEVELOPMENTS IN THE FIELD. THERE ARE OFTEN STORIES OF PATIENTS WHO HAVE HAD SUCCESS OR GOOD ADVICE FOR FELLOW PATIENTS. THE E-NEWSLETTERS ALSO HAVE INFORMATION ON INSURANCE ISSUES WHICH CAN BE SO IMPORTANT TO PATIENTS WITH CHRONIC DISEASE. PATIENTS WHO WANT SUPPORT GROUPS OR SOURCES FOR MORE INFORMATION CAN FIND THESE AT LFNC.

Board Member

Rating: 4

I have been involved with the Lupus Foundation of No. Calif since I was first diagnosed with lupus in 1996. At that time they served my needs by providing information and teaching me how important it was to educate myself. I have volunlteered, done fundraising, served on the Board and started a support group with a grant from the LFNC 10 years ago. I have seen the organization change to meet the current needs of all lupus patients. They have especially stepped up efforts to provide support and information to young people with lupus through social networks. I am very proud to be associated with the LFNC.

Review from Guidestar

Previous Stories
5

Client Served

Rating: 5

When I was first diagnosed with Lupus in 1996, I found their newsletter in my rheumatologist's office with a timely article that applied specifically to me. I became a member of the organization and through their services I learned about lupus and how to manage my disease in a pro-active positive way.

Client Served

Rating: 5

I was diagnosed with Lupus 20 years ago and it was life changing for me. I used the Lupus Foundation of Norther California as my resource of information about the disease. They also directed me to support group that got me through the first few years. I direct those who I come in contact with to the Lupus Foundation and they thank me as their experience is similar to mine. Although, having Lupus is something I have made my peace with I continue to read all the info that the Foundaton provides. I also donate to them as I persoanlly know the value they offer to their clients.

Review from Guidestar

Liz_9

General Member of the Public

Rating: 3

I have Lupus It REALLY helps to get information about what one can do it help be as healthy as one can:D I'm on SSA + SSI I don't have $$ or health to help!

Helen13

Client Served

Rating: 5

I have been a member for over twenty years. Initially the group was a terrific resource for learning about Lupus when I was first diagnosed. I went on to facilitate a Lupus support group in my area for several years. I am in remission for the most part now, but continue my membership as a way of keeping myself up to date on the latest treatments and information.

Review from Guidestar

Isabelle H.

Volunteer

Rating: 5

The Lupus Foundation of Northern California (LFNC) is definitely a great nonprofit organization. As a volunteer, I learned a great deal about the autoimmune disease, lupus, while helping out at the office. My mom who was diagnosed with lupus 15 years ago benefits from knowledge I gain. The staff has one primary goal and that is to make the lives of those people diagnosed with lupus better through patient education, support groups, increasing awareness, and research. Lupus, is a serious yet little known illness. LFNC strives hard to spread the word about this disease because people affected with the disease or are susceptible to getting it can fight it and live normal lives.

Review from Guidestar

Dina T.

Volunteer

Rating: 4

I joined the Lupus Foundation of Northern California as a volunteer because a friend has lupus and i had little knowledge of what this disease was all about. I wanted to help put an end to this disease that was incapacitating my dear friend. i have learned much about Lupus though books, pamphlet, and videos. Recently i watched Rene' Astudillo Executive Director of lupus Foundation of Northern California give an interview on television and he talked about Lupus and their goals for the foundation. i found this to be very informative, he explained what Lupus was and i got an even better understanding of this disease just by listening to him explain it. More interviews on television would be helpful. I have come to understand that we need more research on this disease and more funds.

Volunteer

Rating: 5

Have volunteered with the LFNC for several years and continue to be impressed with its effort and accomplishments. Remarkably the LFNC achieves so much with a small staff of 3, a few active board members and its dedicated volunteers. Lupus is a horrific disease affecting our loved ones with varying levels of complexity - sometimes fatal. Yet very little is known about it by the vast majority of people, sadly even among medical professionals. So it is all the more important to provide support to lupus patients and their families. I know the LFNC strives to do this with care and compassion. Invaluable too are its weekly electronic newsletters that provide information to our LFNC family.

Review from Guidestar

Volunteer

Rating: 5

Working with the organization made me realize how many unselfish people there are who just want to make I difference or make someone's life easier. I've worked with the San Jose lupus foundation for a few years now, and every time I'm there I'm greeted with a smile. Most organizations I've worked with before give you a job that keeps you busy, but might not really have a direct impact on others. Lupus has givin me the opportunity to take on challenges that will help the organization move forward. Personally I will do any job I can to help but with lupus they gave me a opportunity to make a direct difference in other organization and with others, making me feel wanted and needed which everyone wants as a volunteer. Special thanks to Rene, Spandan, and Maggie at the Lupus Foundation San Jose.

Review from Guidestar

Alejandra G.

Volunteer

Rating: 5

The whole team was like a family and everyone who walked into the office was given a warm welcome. I love working with them because I'm not treated like a little kid (I'm 18 but I look younger), I am given the same amount of respect as any other person. Everything is always completed on time and the planning as well as preparing for events is efficient and always on the dot. They've made being a volunteer there fun and I can't wait 'till I go again.

Review from Guidestar

Board Member

Rating: 5

The LFNC is a great organization with a rich history of helping those afflicted with Lupus. By offering education, events, and most important, awareness, to the Lupus cause, the LFNC is an important champion in helping people live with Lupus.

Review from Guidestar

Client Served

Rating: 5

After years of odd health events, I was diagnosed in 1984 with having SLE. As an RN I knew lupus by text book but did not have much experience with the disease. Someone directed to the Lupus Foundation and I found great resources in books to read and conferences to attend. Over the years I have been able to refer many people to the foundation for help, including doctors, family members and patients. Also when you have Lupus and someone who knows you has a friend (usually newly diagnosed with lupus) they call you for help, especially if you are an RN. The newsletter and associated newsletters have brought me lots of great information I have shared with my doctors, family, friends and other lupus diagnosed people. I appreciate research and have been able to be a subject in several lupus and lupus related research studies thanks to the Lupus Foundation getting the information out to me in newsletters and now email. I know of no better resource for our community, lupus patients, family, friends, research and doctors than our very own Lupus Foundation of Northern California. I felt like I mattered when I contacted the foundation for the first time or attended a conference. I feel J. Dewitt was a great director and set a balanced and sound course for our foundation. I also had a letter from Henrietta Aladjem when I wrote her a note about her newsletter and felt like I was important to her personally. It was her books, the first I read about Lupus that I was directed to from the foundation that helped me see that lupus can be lived with. This is the overall message I get from the LFNC- you can live a full and productive life with lupus by taking steps along the way to care for yourself and attend to the lupus. LFNC puts lupus in perspective. Lupus may be part of my life but it is not who I am.

Review from Guidestar

Previous Stories
8

Client Served

Rating: 5

I was diagnosed in 1984 after ten years of "we think you have Lupus but so far it is only autoimmune events". LFNC was BALF then and it was still pretty new but fully functional when I contacted the organization. I received quite a bit of very helpful information and was directed to several books. These books put many things into perspective for they told the stories of Lupus patients. I attended conferences that were educational and helped with doctor visits. The newsletter is an excellent resource for individuals and family members. I have taken it to doctor and dental visits to share the information with my health care providers. Even though I was a Reg. Nurse I did not know about living with Lupus, Sjogrens, Raynauds and Discoid Lupus. The Lupus Foundation gave me tools and direction. I became a person others would send their friends "newly diagnosed" with Lupus to for information and reassurance. I would then direct them to BALF/LFNC and encourage them to ask for information and participate in activities. Many have told me that the foundation was a big help to them and their families. LFNC is a valuable resource for not only the Lupus patient but the community at large as it is inclusive and never exclusive in sharing information and providing avenues for education about a very complicated and deadly disease. I am proud to be a member and I encourage others to join.

SSG3

Professional with expertise in this field

Rating: 4

Provides a great service to help individuals newly diagnosed with SLE.

Review from Guidestar

Client Served

Rating: 4

I was diagnosed in 2010. I have come to Lupus of Northern California for support and have joined support groups to understand the disease and better education myself and my family.

Review from Guidestar

Susan106

Client Served

Rating: 5

Lupus Foundation of Northern CA does a wonderful job of providing lupus information to patients and the community. The email newsletters are informative and interesting. I recently attended a lupus seminar and got a chance to meet others with lupus and discuss important topics. I think Rene is doing a fantastic job!

Review from Guidestar

Donor

Rating: 5

The Lupus Society of Northern California helped us when my daughter was diagnosed with lupus 28 years ago. They explained what Lupus was to us and we signed up with for the newsletter, offered us videos to take home and were so patient. Before we talked to them we had no clue, yes the doctor explained but when we heard Lupus we stopped listening... We thought it was leukemia. Ever since I have been a donor. Jo Dewhirst was wonderful and since she has left the Lupus Society has continued to improve. I appreciate the emails of the newsletters and up to date notifications of new drugs and studies that are taking place, as well as other patients' outcomes. This year we participated in the Lupus 5K and will continue to support this wonderful organization that helps so many.

Review from Guidestar

Donor

Rating: 5

this organization has been very helpful to my wife, who has Lupus. If it weren't for the foundation we wouldn't have had any resources to review in our area. Additionally, they have been very supportive to my wife when she needed their help coping with the disease.

Review from Guidestar

General Member of the Public

Rating: 4

I support and appreciate all that the Lupus Foundation does to help both those affected by Lupus.

Review from Guidestar

Julie68

Donor

Rating: 5

My Mother died from this disease in 1971 at the very young age of 32. As if that was not hard enough to bear, a very good friend of mine also passed away from Lupus at the prime of her life! Finally, I have a step-sister who also has the disease, but she is managing the symptoms wonderfully, thank goodness. For some reason this disease has been a big part of my life. The Lupus Foundation is a place I feel I can help with donations, and in the long run help other people who have this disease! I am comforted to have this organization keep me informed of the latest developments in curing Lupus! I also look forward to the annual Run?Walk for Lupus!! Keep up the great work!

Review from Guidestar

4

Client Served

Rating: 5

Many, many years ago I donated and walked for one of the fundraisers because a young woman I knew had systemic lupus. Previous to that walk I knew nothing about lupus. I learned recently that the young woman has had a transplant and is doing well. Last year I was diagnosed with subcutaneous lupus. Although it is not the more serious diagnosis, very little is known about it and it is difficult to research the kind that I have. I emailed the foundation requesting information; but didn't expect to hear anything back. Not only did I get a written personal information but references, and aphone number to call with questions. I am very impressed by this organization! Pamela

6

Donor

Rating: 5

I found the organization on Facebook. Years ago a friend of mine revealed to me about his lupus diagnosis, so I tried to read up and research about this little-known disease. Through their website and their eNewsletters I've learned much about lupus. Lots of useful information, especially on research development. I've made it a point to donate to the organization whenever there is the opportunity. Glad to support such a great organization.

6

General Member of the Public

Rating: 5

LFNC has provided me with so many supportive oppurtunites for me since I found about them over a year ago. They run a youth support group that has been so helpful to me. I love getting together with other people my age that understand what I am going through. I participated in a webcast with LFNC about teens with lupus. I had never experienced anything like that before and loved having the chance to be part of it! The annual walk that is put on by LFNC is always a great time. It is so good to see so many people coming together for such a good cause.

7

General Member of the Public

Rating: 5

When my sister, Sophia Lin's third child was born, she already didn't have enough time in the day. It was completely frustrating to try to pin down the different ailments that began to plague her, such as swollen glands, stiff fingers, constant fatigue and on on on while caring for a new born and his two siblings. Prescriptions, never ending concern, doctors, teaching hospitals were all added to my sister's already impossible schedule. While we as her family loved and supported her there was little that we knew and understood. Then one day, my sister was diagnosed with Lupus. This part of the journey led us to LFNC. A one stop resource that both patient and loved ones could learn from through current conversations, networking, professional research, invaluable peer support, and organized pro-activity to make a difference in a heretofore little known mystery disease.

7

Client Served

Rating: 4

My daughter, Diemmi Nguyen was diagnosed with Lupus when she was 5 years old Lupus was rare and we had very little knowledge about it. However the Lupus Foundation Of Northern California (LFNC) gave us a tremendous amount of support and assisted us in many different ways. She was giving all of the treatment that she needed and we learned how and what to look for so that she could have a healthy life. The organization helped her gain more confidence and never give up. Unfortunately, the Lupus spread and destroyed her body very quickly and she passed away within a month. It was hard to watch her go, but without the incredible from the doctors and the many Lupus organizations, including the LFNC, my daughter would not had such a wonderful, memorable, and meaningful final 19 years of her life. So, THANK YOU for all the support and help that many doctors,and LFNC have provided to us and we are confident that they will continue helping many more patients.

5

Volunteer

Rating: 5

I have learned much about lupus from the Lupus Foundation of Northern California’s education and advocacy programs. Their electronic e-newsletter has some great articles, with health and life management tips that are great for lupus patients (and are often applicable to those without lupus too). And their facebook page often reports on stories where lupus patients or new drug possibilities are in the news.

6

Client Served

Rating: 5

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.

6

Professional with expertise in this field

Rating: 1

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

4

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!!

4

Donor

Rating: 5

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.

5

General Member of the Public

Rating: 5

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.

4

Client Served

Rating: 5

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

6

General Member of the Public

Rating: 5

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.

6

Client Served

Rating: 5

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

6

General Member of the Public

Rating: 5

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.

6

Client Served

Rating: 5

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.

6

Board Member

Rating: 5

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.

6

Client Served

Rating: 4

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.

4

Former Volunteer

Rating: 1

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.

6

Client Served

Rating: 5

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!

4

Client Served

Rating: 4

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.

1

Client Served

Rating: 5

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.

5

Client Served

Rating: 5

Upon being diagnosed with lupus, I immediately began searching for information to help me understand and deal with this chronic disease. The Lupus Foundation of Northern California provided information and support. It has been eighteen years since then, and I continue to make use of their services through the newsletters and workshops.

6

Client Served

Rating: 5

Hello, I am a Lupus Nephritis survivor. I was diagnosed about the same time that LFNC was started, about 30 years ago. I immediately looked lupus up in the encyclopedia where I found the words, "life expectancy is 5 years." Luckily my neighbor knew a woman who was involved in the Lupus Foundation. I called her and I immediately went to a meeting of lupus sufferers like myself. I ordered pamphlets and any information I could to understand this disease I had contracted. The issues of the Lupus Foundation that came twice a year and the newsletters from LFNC I read and studied and I believe that it is because I learned about my disease that I am still living today. The internet didn't exist then and had it not been for the Lupus Foundation where would I have gone? I learned how to communicate with my doctors and how to cope with living a life that was so different from the life I had imagined. I know that LFNC helps people like me everyday and I am proud of my membership and I will always stay a member.

6

General Member of the Public

Rating: 4

My husband is a lupus pt, who to this day is still somewhat in denial. I find the website to be very supportive for me and often forward positive news info to my husband in hopes of encouragement. This site has a fountain of information for those impacted by lupus. Thank you.

8

Board Member

Rating: 5

My sister was diagnosed with lupus in 2005. Our family knew very little about the disease. The LFNC was instrumental in provided us the resources and information we needed to learn about this disease. The education classes and confereneces were so helpful to my sister. I was so impressed with this organization and what they offered to lupuis patients that I knew I wanted to be more involved and so joined the Board.

8 rabbihcohn

Client Served

Rating: 5

My wife has lupus and we try to support various groups that fund research of this disease as well as provide information for those suffering from lupus and their families. The information that LFNC provides has always been helpful. Their various publications are well-written, concise and deal with the concerns of those who have lupus. Additionally, they give us current information on significant research that is taking place. We happily support LFNC to the best of our ability.

8

Board Member

Rating: 5

I have been involved on the Board of LFNC and applaud the commitment of its members, staff and supporters, to provide ongoing education and counseling for those affilcted with Lupus. Through their efforts, they bring answers to troubling questions about the disease and guidance for those in need of assistance.

5

Former Volunteer

Rating: 5

I am a registered nurse, a person diagnosed with lupus and a person who ran a support group. There were no support groups when I was diagnosed that were near by. The L.F.N.C. helped me start a group which I ran for several years with their support. I would have never attempted to do this without their support. I hope I helped a few people when I did do the group. It became too difficult for me to do the group and work so I had to give up the group. I appreciate the L. F.N.C. for all their help and know they have helped many people through out the years. Sincerely~Sheila Thompson, M.S.N.

Comments ( 1 )

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lfnc 07/01/2010

Dear butterly-face, You've spoken. We've listened. The address labels per your request are in production and will be sent out soon! Rene Astudillo Executive Director

5

General Member of the Public

Rating: 5

My family and I participated in the Run/Walk for Lupus for the past two years... I am grateful to have the opportunity to show my sister how much we support and love her! We made it into an annual family & friends get together and its been a rewarding and fun experience!

4

Client Served

Rating: 5

I am most grateful for Lupus Foundation of Northern California for the information they provide. I was diagnosed with lupus at the age of 47 and had no idea what this disease was or could do. Through the Lupus Foundation of Northern California I have been kept up to date on new drugs to treat lupus and which I have had a chance to discuss with my doctor. I would be at a complete loss if it were not for the Lupus Foundation of Northern California.

4

Client Served

Rating: 5

LFNC has always been and excellent resource for me and my family. I appreciate all the information they provide on their website and through their newsletters.

5

Client Served

Rating: 5

As a parent of a lupus patient, I rely on LFNC to keep our family informed of lupus-related news via email. I have also attended several of the brown-bag lunch talks and found them to be very informative and relevant.

4

Volunteer

Rating: 4

As the parent of a child with lupus, LFNC has been an invaluable resource. We have benefited immeasurably from their informational online chats, publications, online resources and conferences. In addition, our daughter has been able to take an active role in organizing a fundraising team for the lupus walk. This has given her an opportunity to take action and meet others with lupus and arthritis, which has been very helpful to her coping with the illness.

4

General Member of the Public

Rating: 4

Being diagnosed with Lupus was scary. I had heard of it but knew nothing about it. When you have a diagnosis of a chronic disease the symthoms are constantly changing. I needed a resource that had current information as well as support to help me through each step. LF has given me that. I have attended symposiums, read the website, blogged others in my situation. All of this was only available with the help of LFNC. Thank you..

5

Client Served

Rating: 4

I have been a member of LFNC for several years. They have provided me with excellent educational information about Lupus. I especially enjoyed the monthly newsletters and information on recent research. The most beneficial service they provide is the opportunity to attend conferences locally that they sponsor. The doctors who speak at these conferences are experts in their field of immunology. Also nurse practitioners and nutritionists have lead discussions. This is very informative and supportive.

4

Client Served

Rating: 5

When our daughter was diagnosed with Lupus we immediately were advised to hook up with LFNC which we did. We were infinitely supported by their magazine, updates about on going research successes, workshops and seminars. We are proud to be supporters of this wonderful organization whose volunteers and staff are committed and caring.

5

Board Member

Rating: 5

I met Jo to interview for a Board position and it was her passion and vision for LFNC that helped start me on my five year learning journey. I had never even heard of Lupus and now I have gratefully been able to refer clients and friends for services and for donations. The whole community of volunteers is amazing and I am proud to have been a part of such a genuinely dedicated group of men and women.

5

Donor

Rating: 5

I have many friends who have been touched by lupus, and want to do all I can to help. The Lupus Foundation has brought awareness to my community by humbly but confidently asking for specific support through donations, education, and many other services.