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March 12, 2013

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March 12, 2013

Just wanted to say that the ICA is alive and well. It is true that in 2011 we lost a grant from the CDC that represented a large portion of our yearly budget. The Board of Directors of the ICA spent many long hours trying to come up with a plan that would allow us to continue with our mission which is now, and has always been, to provide education, advocacy and research dollars to educate patients, family members, physicians and researchers. Unfortunately, as with any downsizing, some jobs were cut. After much research, it was determined that becoming part of an Association Management Company would be a way for us to continue operating and cut some of our expenses.

The day-to-day operations of the ICA are managed by our Executive Director, Lee Claassen. We also have a Program Coordinator and an employee who handles the day to day phone calls and requests for informational materials. Additionally, we have two patient advocates who work tirelessly to help those suffering with IC and several volunteers.

We have a strong Board of Directors whose job is to set goals and plan for the future of the ICA. There is no lack of transparency as we are required to file a Form 990 with the IRS on yearly basis. This report is available to the public. We also prepare an annual report that includes financial statements as well as highlights from the year.

As you can see, the ICA is not in LIMBO! In fact, far from it!!

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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... more

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.

May 18, 2010

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May 18, 2010

I think that the ICA has help to bring awarness and education not only to the Drs and caregivers, but the the people who are living with this chronic conditon. It will change your life. I thank the ICA for there efforts and support to people with IC. thanks

The Great!

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

the fact that they publish a great newletter and email with update treatment and info to help patients and caregivers alike.

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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?

2007

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

March 18, 2010

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March 18, 2010

When I was told I had IC in 1990 there was very little information available for doctors or patients. I was fortunate that I had one of the best doctors in the nation who directed me to a support group that had materials from the ICA. Soon after that my sister encouraged me to get a computer and "on the net" (this was the olden days!) and join online chat groups that she had found about IC. I've been using the support system of the ICA ever since. Whether it's checking on their website for new treatment protocols, checking the Facebook updates, getting my ICA email updates or directing newly diagnosed people to their website, the ICA plays a critical part in IC treatment for anyone who is going through the journey of learning to live with IC and the many autoimmune issues they will also have to deal with. The ICA freely shares information, support and guidance to members and non-members, patients, family and doctors; and has been building their website resources as well as trying to keep support groups going in real locations as well as on the internet. The ICA has given great support to my doctor, Dr. Robert Evans, who is dedicated to IC research and finding a way to relieve the pain that limits our lives each day. They have given him a platform to share his knowledge and a place to share his ideas with other researchers. I'm sure their support has allowed him to get some of the funding and attention he needs to continue the research he is doing. I know that research will eventually help me on a personal level, because he SEES me and he KNOWS me and how IC AFFECTS me, and he's working hard to find something to HELP me and others, and the ICA HELPS HIM HELP ME.

The Great!

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

the increase of treatment options for IC; better awareness & information sharing about IC for patients & doctors;that IC is now officially recognized by Social Security as a disability; the ability to share my knowledge with others.

Ways to make it better...

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

stop having the huge parties, galas, mailings, events asking for money & use THAT money on a fund for patients who need help paying for medications, doctors & insurance after diagnosis (& don't tell me they have to spend that money to get donations).

More feedback...

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

Their move into Facebook- it's been so amazingly helpful to people who are just now being told they have IC. It brings "seasoned" ICers together with newbies to share their experiences and let them know they will survive.

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

The person that takes care of the IC Facebook site and ICNetwork is a great woman and has been involved for years. She's knows her stuff about IC and works hard.

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

Make a fund available to provide drug insurance/medical insurance coverage until people are able to qualify for Medicare once they have to apply for Social Security Disability.

Ways to make it better...

I never had IC.

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

Competing for funds with all the other worthy organizations needing attention - just in my life alone there is the Alzheimer's Assoc., Chris.Reeve Paralysis, MS Society, SCI Life, Marc Brunicotti, Hospice, they all deserve.

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

The ICA allows patients, family members, doctors, friends & anyone interested in research to get objective, up to date information, share stories & ideas, find referrals and help. The Interstitial Cystitis Association is a great non profit organization.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

March 9, 2010

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March 9, 2010

The ICA website is a wealth of information. For t those newly diagnosed, it is absolutely essential they learn as much as they can from ICA. I've been diagnosed for over 4 years now and the only people I've run into that have heard about IC are urologists and ob/gyns. I wish ICA could produce a commercial on TV to promote awareness. This is such a painful disease and we deserve more attention and research done on finding a cure.

The Great!

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

helping me to understand I am not alone and there are millions out there also going thru what I'm going thru. The website has a lot of info on diet, research studies, help with social security, lists of doctors and more.

Ways to make it better...

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

More feedback...

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

knowing that I am not alone. When others see that I look fine on the outside and don't understand my pain, I find others suffering just like me on the ICA website and their facebook group.

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

produce TV, radio and internet ads promoting awareness.

Ways to make it better...

The only people I've run into that have heard about IC are urologists and ob/gyns. I wish ICA could produce a commercial on TV to promote awareness. This is such a painful disease and we deserve more attention and research done on finding a cure.

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

not enough money to fund proper research for a cure, and not enough to start a large scale awareness campaign.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

March 4, 2010

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March 4, 2010

I found this website by doing an online search when I was diagnosed last Summer. They had the most up to date information on everything for diet to meds to keeping journals to finding Helathcare providers. My Urologist, who is great, was not a memeber and did not have materials. I reccomended the website to both him and another Health Professional and they thought it was great. I have ordered several books, and they have helped me figure out my diet restrictions. I owe a ton of thanks to ICA for helping me figure out where to go and to have some hope for the future.

The Great!

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

my everyday life.

Ways to make it better...

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

like to see all Helathcare Providers participate.

More feedback...

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

the wealth of information and resources available.

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

Kind, curtious and knowlegdable.

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

Probably help find a cure. They are great avocates already, up to date on research, politics, etc.

Ways to make it better...

my Doctors had know the same information I found at ICA.

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

typical obstacles of awareness and funding.

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

They have been the greatest help to me of anyone. I owe them a debt of gratitiude.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

March 4, 2010

more

March 4, 2010

When I was diagnosed with IC I had never heard of the condition. When finding this organization on the web I felt I was not alone with my suffering. The diet suggestions and other helpful information helped me get through the worst of it and even persuade my urologist to try a procedure that make my life better.

The Great!

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

Improving the quality of life for IC suferers

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

March 4, 2010

more

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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