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gracie

April 9, 2012

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1 previous review
April 8, 2011

As much as I like this organization, it is woefully lacking in transparency. I would like to see public board meetings, public annual meetings for the membership and, in general, an opportunity for me... text

April 9, 2012

I've been asked to write a follow up review of the ICA and, sadly, must report that in 2011 the organization has let go most of their staff due to the loss of their federal funding. They are now using a non-profit management organization to manage the day to day operations. They seem to be "in limbo" made all the more challenging by their disconnect from their own membership who, yet again, are not involved in the planning and goal setting for the organization. Their lack of transparency remains a concern. I would be much more inclined to donate again if meetings were public and members/donors were given some way to be involved in the goal setting and planning of the organizations mission.

More feedback...

Was your donation impactful?

No

How likely is it that you would recommend that a friend donate to this group?

Unlikely

How likely are you to donate to this group again?

Unlikely

When was your last experience with this nonprofit?

2011

April 8, 2011

As much as I like this organization, it is woefully lacking in transparency. I would like to see public board meetings, public annual meetings for the membership and, in general, an opportunity for members to participate in the organization and the selection of research studies to be funded. I am disappointed that they cancelled their support group program. They don't seem to have the patient as their first priority.

The Great!

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

several ways. They gave me the first information on IC that I had. They gave me a physicians list, a diet list and some nice support group leaders to talk with.

Ways to make it better...

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

open the doors and become fully transparent. Involve the IC patients far more. We have ideas that have value.

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wolfaleena

March 23, 2010

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March 23, 2010

This nonprofit has been a lifesaver for me and my family. I was diagnosed with Interstitial Cystitis in 1995, but had it for many years prior to my diagnosis. Before i was correctly diagnosed, I was sent to many physicians. I still suffer 20 years later terribly with this disease, BUT The Interstitial Cystitis Association has allowed me to understand, cope and has given me HOPE for the future for a CURE!!! Making donations several times a year I have also made tribute gifts in honor of my heathcare providers. The ICA update which is published quarterly by this organization is chock full of Must have information for an IC patient suffereing from this difficult disease. When there was no one to turn to i the early 1990's this organization, basically saved my life, by allowing me not to feel isolated. This organization is worthy of your finacancial support in order for it to contiue to provide that much needed assistance IC patients so desperately need. They helped me to gain the knowledge i needed to help me make informed medical decisions. Their website is also available and they are now on facebook. Always seeking new ways to reach a suffereing patient. Please donate to this valuable non-profit.

The Great!

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

Awareness for IC assisting patients with ic

More feedback...

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

help fund research for a CURE for this debilitating disease

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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chasingbliss

March 4, 2010

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March 4, 2010

The ICA is a wonderful organization dedicated to supporting IC patients and their friends & family. They are focused on educating and informing us about current research, news and advocacy through excellent publications such as the ICA Update and the ICA e-Newswire. They also offer excellent patient and caregiver support via email & the web - ICAmail@ichelp.org and www.ichelp.org respectively. The ICA helped get me through the most difficult year of my life - the 1st year after diagnosis - and I recommend their organization to everyone I meet who lives with this terrible disease like I do.

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More feedback...

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

funnel $ into the NIH for desperately needed research on IC. Over 1 million people suffering with this disease are praying & hoping every single day for a cure. Without research our hope is stolen from us. W/$10 million the ICA could give us our hope back

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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