My Nonprofit Reviews
drenec
Review for Lupus Foundation of Northern California, San Jose, CA, USA
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.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
Review for Lupus Foundation of Northern California, San Jose, CA, USA
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.
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I've personally experienced the results of this organization in...
my home, my life and with my family.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
