How You Can Support The IC Movement
#1 Support the IC Network
As the largest support group in the world with over 200,000 members who participate for free, it’s vitally important that we have funds to keep our services going. With sponsorship dollars on the decline across the industry, your ICN subscriptions and direct gifts that help us maintain our extensive 24/7 support forum and develop new educational resources.
Five reasons why we think we are deserving of your financial support.
- We are the only patient support group that has an educational phone line and answers patient calls every weekday, all at no charge to our members. 1-800-928-7496
- We operate IC Awareness Month at a loss every year because it’s so important to get the word out.
- We provide a free e-newsletter to more than 27,000 readers each month keeping patients informed of the latest news, research developments, clinical trials and self-help strategies.
- Despite very modest funding, we have been rated the TOP (most accurate, credible and reliable) patient website dedicated to IC in research studies done by Harvard Medical School (2011) and the University of London (2013).
- We employ IC and/or pelvic pain patients because we believe that patients do have the ability to work and contribute meaningfully to this cause.
You can help us several ways!
- Purchase an ICN Patient or Professional Subscription! – The IC Optimist, our quarterly magazine, was launched in 2004 for patients who wanted a printed resource that they could share with their families and friends. We call it the IC Optimist because we are very optimistic about the future of IC! Learn more about our subscriptions!
- Make a direct contribution or gift! – Every so often we receive a very special phone call from a patient who says “You’ve helped me so much, I want to give you some support.” Their generosity is both humbling and affirming. It means that we’re doing it right! Patient donations help keep us going! Please note that your contribution is not tax deductible. The ICN is organized as a social advocacy small business thus we are not eligible for traditional non-profit tax deductions. If we’ve made a difference in your life, please consider making a difference in ours! Click here to make a gift!
- Give the gift of your time – Writers, editors, artists, techies, programmers are all part of this wonderful family! If you are interested in volunteering, please email email@example.com
#2 Donate Directly to IC Research
- Beaumont Hospital – Beaumont Hospital, located in Royal Oak MI, is the leader in IC/BPS research in the USA. Led by Ken Peters MD, their urology research efforts have uncovered dramatic new findings that are helping clinicians better treat IC. What makes Beaumont a great donation choice is their focus on the patient, their desire to improve patient care and their willingness to study elements of IC that few other research centers have explored. Checks should be made payable to “Beaumout Foundation ” and the Memo line of the check should say “Urology – Interstitial Cystitis (or IC) Research” They should be mailed to:The Beaumont Foundation, 3711 West Thirteen Mile Road, Royal Oak, MI 48073
- USC – Dr. Jason Kutch is exploring the relationship between brain function and muscle tension, specifically how the brain appears to amplify pain in patients who struggle with IC, pelvic floor tension, IBS, vulvodynia and the other chronic overlapping pain conditions. This is vital research that will help us understand how and why chronic pain develops and, more importantly, identify new treatments that focus on reducing the amplification of pain by the brain. His interests include computational brain mapping, centralized pain, brain-based therapeutics and pelvic floor disorders. Donations should be made to USC. The memo line should state “Dr. Jason Kutch Research.” USC Advancement Gift Services, 1150 South Olive Street, 25th Floor, Los Angeles, CA 90015.
- Support your local researchers by donating to a university doing IC research. – Click here to see a list of IC research centers currently conducting clinical trials on new IC therapies.
#3 Think Local!
- Donate to a local support group that is serving IC patients – They can use stamps, cash or even book donations for low income patients. Check our list of groups in the support tab at the top of this page.
- Purchase and donate books on IC and/or pelvic pain for your local library – Most patients visit their libraries in search for information only to come up empty handed. YOU can make a difference in their lives by purchasing any of the IC books and donating them directly to your local library! Purchase books here!
#4 Other IC/BPS Organizations
In this day and age of limited resources, it’s very important that you verify that a non-profit is meeting basic charity standards before you send them your hard earned dollars. The BBB Wise Giving Alliance provides a basic guideline on what you should look for, and the questions you should ask, before making a donation to ANY IC non-profit. Click here to read their Standards for Charity Accountability. Before you make a donation please ask:
- How much of your total income last year was donated to research?
- Will my donation be used for research or for overhead (salaries, etc.).
- Do they have annual meetings where the finances are presented to the members or public?
- Do they have open Board of Directors meetings that you can attend, or do they conduct business behind closed doors?
- Ask how you can participate in that organization. As a donor or member, do you have a voice in that group?
If you are considering making MORE than just a modest donation (i.e. over $50), please review their IRS Form 990’s for atleast the previous three years to see exactly how much money is donated for research. You can find these forms on most non-profit websites. If this info is not available, you can request copies of their previous two annual IRS Form 990’s by mail. All 501(c)3 non-profits are required to provide you a copy of the 990 within thirty days of your written request. If you’re happy with the information you receive, then support that group! If not, we suggest that you consider other groups.
Revised: September 12, 2022 – jho