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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.

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 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 24, 2010

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June 24, 2010

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.

The Great!

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

positive information for future treatment options.

More feedback...

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

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!

The Great!

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

the annual walks this group organizes.

More feedback...

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 23, 2010

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June 23, 2010

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..

The Great!

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

San Jose, CA. website

Ways to make it better...

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

Hope they could present more symposiums in the San Jose area. Education and support.

More feedback...

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

education and support.

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

helpful, knowledgable.

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

host more grassworks meetings. Send their magazine to those affected by Lupus for free.

Ways to make it better...

I could have attended a support symposium.

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

continuing to reach the people who need the help the most.

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

thank goodness the LF is there for me and my young son.

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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