IC Awareness Month

September is IC/BPS Awareness Month

September 1, 2014
by icnjill
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Donations for IC Research & IC Awareness Month Information

Donate Directly To A Research Center

peters_kennethMany have asked how they can support research through IC Awareness Month. We encourage patients to consider donating to Beaumont Hospital (Royal Oak, MI) Led by Ken Peters MD, their urology research efforts have uncovered dramatic new findings that are helping clinicians better treat IC.

In Spring 2008, prolific IC researcher Michael Chancellor MD (botox, liposomes, neuromodulation) joined the team as their Director of Neurourology making this a truly dynamic research environment that will be exploring cutting edge technologies and therapies. Their Women’s Initiative for Pelvic Pain and Sexual Health (WISH) program is outstanding.

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. Learn more about their urology research efforts here!

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

Or you can participate in the Pennies for IC Patients campaign currently being run through Facebook!

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IC Awareness Month Donations

IC Awareness Month activities are currently being underwritten entirely by the IC Network. We certainly could use some assistance in paying the bills for the campaign, including press release distribution fees ($300), printing, contest winners and creative projects. We’re IC patients just like you so please consider helping us pay the bills!

Did you know that the IC Network has managed IC Awareness Month activities for the past five years? That’s because the pharmaceutical company that normally underwrote it abandoned their IC Awareness projects. We just couldn’t let the campaign die and we think we’ve done a pretty good job with it. Our goal is to empower patients with resources and materials so that they can make change and be an activist in their own community. IC Awareness Month is modeled after the very successful National Women’s Health Week Campaign! If you think we’ve done a good job and that our efforts are worthwhile, please donate using a link below!

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Make A $100 Donation
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Make a $250 Donation
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Make a $50 Donation
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Make a $25 Donation

August 31, 2014
by icnjill
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IC Awareness Month Begins – Ten Ways You Can Be Involved

poster-2014-400The most exciting time of the year for the IC community, IC Awareness Month, begins September first as patients around the world unite to educate others about IC.

We need to reach those patients who are suffering in silence and give them hope. We need to educate doctors who are still treating IC out of old textbooks that new treatments are available. We need to educate our community leaders and government representatives that our need for rest room access is legitimate and vital!

So, how do we do this? Through people like YOU who believe that patients deserve kindness, compassion and better care. IC Awareness Month is the ultimate grass roots campaign. There’s no big pharmaceutical company backing this.. it’s driven by patients who truly believe that we deserve a better future!

Official Video

Ten Easy Ways You Can Help

1. POSTER POWER

One of the easiest things you can do is just put up our poster at your local church, coffee shop or, better yet, send it to all of your doctors and ask them to post it so that other patients can learn about IC. Use the poster on the back cover of your Summer 2014 IC Optimist or print out and share our official poster

2. FACEBOOK, TWEET, PINTEREST & INSTAGRAM IT UP!

Share the campaign website (http://www.icawareness.org), posters, 30 daily facts on your Facebook, Twitter, Pinterest, Instagram pages!

We also have Facebook Profile and Timeline pictures that you can use!

3. DARE THE PRESS TO COVER IC

Ask your local newspaper to do a story on IC and IC Awareness Month. We’ve prepared a simple, two page press release (featuring Dr. Rob Moldwin) you can send to them, ideally with a paragraph about your own personal story. Newspapers love to discuss how lives have been changed, for better or for worse. You can use your own name or ask them to use a pseudonym. Download the official press release here!

4. POSTER & TIMELINE CONTESTS NOW OPEN

2014 Poster Contest – Bring out your inner artist and create a poster for IC Awareness Month sharing your own interpretation of life with IC. Have you children make their own poster with your choice of medium: digital, watercolor, crayon, markers! Your choice! All posters will be added to our website and the winners will receive $100, $75 or $50 gift certificates from the ICN Shop! Learn more and see poster samples here!

2014 Timeline Contest – Last year, we had some fabulous entries and I know that this year will be even better. What we’re looking for is an image, collage, drawing that shares your story of life with IC for use as a Facebook Timeline Image. All languages welcome! Learn more about see timeline image samples here!

5. HIT UP LOCAL RADIO & TV STATIONS

Radio and TV stations love to do public service announcements! We’ve got four scripts that can be used for a simple, easy PSA to share info on IC. Sample public service announcements

6. DONATE AN IC BOOK TO YOUR LOCAL LIBRARY

If you tried to get information on IC and visited your local library, you probably found ZILCH! Yes, that’s right, most public libraries do not carry books on IC unless a patient or a support group donates one or two. So, think about making a gift of a book to a local library! Click here for some book ideas!

7. ASK FOR PROCLAMATIONS

Ask your City Council, County Board of Supervisors, State, Provincial or National legislators to pass a Proclamation to honor IC Awareness Month. We’ve made this as easy as possible with a pre written proclamation! Use the copy in your IC Optimist or print it out here!

8. START A SUPPORT GROUP OR SUPPORT ONE NEAR YOU!

Donate to a local support group that is serving IC patients – They can use stamps, cash or even book donations for low income patients. If there’s no group near you, please start one. Learn how in the ICN Support Group Resource Center.

9. EDUCATE OTHERS WITH OUR NEW IC FACT SHEETS

The ICN has developed a new series of fact sheets for 2014. Share them with your family, friends and medical care providers here! Free downloads here!

10. WEAR YOUR PRIDE

Wear your pride with our official IC Awareness Month pins, silicon bracelets and, in next week, IC Awareness Month Car Magnets. Available in the ICN Shop

IC Awareness Items

Awareness Pins

Awareness Bracelets

Car Magnets

August 28, 2014
by icnjill
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2014 Public Service Announcements

30 seconds – Restroom Retaliation

Are you being punished for asking to use the restroom at work? Are you forced to hold it out of fear that you could lose your job? You have the right to use the restroom in any job. Patients with interstitial cystitis, prostatitis, incontinence, various cancers and even pregnant women need restroom access! September is IC Awareness Month. Learn more on our website: www.icawareness.org

30 seconds – Enjoy Life Again

If you avoid car rides, plane flights, movies and concerts because of bladder pain and discomfort, you may have interstitial cystitis / bladder pain syndrome. It affects more than 12 million men and women in the USA. Don’t suffer in silence! There are treatments that can help. It’s time to enjoy life again! Learn more at: www.icawareness.org

30 seconds – Cranberry Juice Can Hurt

Are you drinking gallons of cranberry juice to help your bladder? Contrary to popular belief, cranberry is not recommended for all bladder diseases. For patients with interstitial cystitis, cranberry juice can trigger severe pain and discomfort. If you’re struggling with urinary frequency, urgency or pain as your bladder fills, talk with your doctor. You may have a condition called “interstitial cystitis.” Early diagnosis is essential. Learn more at: www.icawareness.org.

30 seconds – Coffee Hurts

Does a cup of coffee lead to numerous trips to the bathroom? Does your bladder hurt as it fills with urine? Interstitial cystitis affects millions of men and women in the United States and around the world. Patients are often misdiagnosed with bladder infections despite the fact that their urine cultures are negative. IC Awareness Month offers hope and encouragement to patients who are suffering in silence at home alone. Learn more at: www.icawareness.org

30 seconds – IC Affects Millions of Men and Women

Are you unable to sleep through the night without using the restroom? Are you struggling with bladder infections but the tests come back negative? More than twelve million men and women in the USA struggle with symptoms of severe urinary frequency, urgency and/or pain. Interstitial Cystitis is real and treatable! For more information, please visit icawareness.org

August 28, 2014
by icnjill
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2014 IC Awareness Month Press Release

FOR IMMEDIATE RELEASE

September 1, 2014

Patients Suffer As Employers Limit Restroom Access
September is Interstitial Cystitis Awareness Month

(Santa Rosa, CA) Have you been punished at work for asking to use the restroom? Employees of the WaterSaver Faucet Company face probing personal questions and termination if they use the restroom more than six minutes per day, according to a recent complaint filed with the National Labor Relations Board. This arbitrary standard can place a tremendous burden on dedicated, career employees who struggle with a prostate, bowel or bladder disorders, such as interstitial cystitis.

Robert Moldwin MD“Restroom access is a critical need for many of my patients who, if forced to wait, experience severe pain. The longer the wait, the greater the pain. Anxiety and worry naturally builds when people are watching and/or making comments about the number of bathroom visits needed” offered Robert Moldwin MD (Director of the Pain Center, Smith Institute of Urology, NY) and co-chairman of the NIH funded Multidisciplinary Approaches to Pelvic Pain Research Study. He continued “The final blow is the manager who places restrictions on bathroom visits based upon their own voiding habits (of course they usually void about four times a day) and who just can’t get the fact that someone can have a medical problem and look normal.”

This September, patients around the world unite to educate and raise awareness about interstitial cystitis / bladder pain syndrome (IC/BPS). The 2014 theme, “For Years We Suffered, Now We Stand Together”encourages compassionate restroom access, affordable therapies and improved medical care provider education.

Interstitial cystitis can be disabling. Hunner’s lesions and/or pinpoint hemorrhages are found on the bladder wall, allowing urine to penetrate deeply into the tissue. Inflammation then triggers symptoms of urinary frequency, urgency, pressure and/or pain, disrupting sleep, work and normal daily life. Simple tasks such as driving, sitting and intimacy can be painful.

Jill Osborne MA“Another key goal of our 2014 campaign is to encourage patients to talk with their doctors if they cannot afford traditional therapies.” offered Jill Osborne, President of the Interstitial Cystitis Network. “The only FDA approved oral medication for IC, Elmiron® , can cost more than $600 per month for patients who lack health insurance, with no generic available.” Patients, particularly those on Medicare and Medicaid, hope that the manufacturer, Jannsen Pharmaceuticals, Inc. will hear their plea for a more affordable pricing structure.

The IC Awareness Month campaign encourages patients to be health activists in their community. They can distribute educational materials to physicians and clinics, design posters, start support groups, encourage their political representatives to issue proclamations, share their stories with local media outlets and donate to IC research centers.

Learn more about IC and the campaign by visiting our website, http://www.icawareness.org.
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Additional media materials, backgrounders, expert interview opportunities, and IC fact sheets are also available.

Contact: Jill Osborne, President 
Interstitial Cystitis Network – PO Box 2159, Healdsburg CA 95448
(p) 707.538.9442 or 707.538.9446 (f) 707.538.9444 (e) jill@ic-network.com

Founded in 1995, the Interstitial Cystitis Network (http://www.ic-network.com) is a woman owned, “social advocacy” health education company dedicated to interstitial cystitis and other pelvic pain disorders. Using the internet, we create innovative solutions to the pressing problems facing patients diagnosed with urologic conditions, medical care providers who care for them and the research community seeking new treatments and cures. For the past 18 years, we have provided critical 24/7 support to patients in need, developed new educational materials, conducted vital research, provided webinars/lectures and created IC awareness campaigns, all at NO COST to the patients who visit our website.

August 25, 2014
by icnjill
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Facebook Activities – IC Awareness Month 2014

Social networking is vital to our success. You can educate more people with a simple post on your Facebook and blog pages than many of us can with a national press release. We ask you to please spread the word.

Participate in Tali’s IC Awareness Month Facebook Activities

Our coordinator this year is IC’er Tali Keteri (of MTV fame) who has, yet again, created a fabulous Facebook campaign that will be fun, powerful, meaningful and reach out to others! Starting on September first, you can check the IC Network’s Facebook page and the IC Awareness Month Facebook page for the project of the day or week!

Add One Of Our Facebook Badges

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Please change your profile picture to our Awareness Badge for the month of September.

1. Right click on your preferred picture above and save it to your desktop. Apple users can simply drag the picture to their desktop.
2. Open up your personal page on Facebook.
3. Move your mouse over your profile picture until the link “Change Picture” pops up. Click “Choose File” and select the awareness month picture on your desktop.
4. Post an announcement that IC Awareness Month has begun in your status

Add Our Facebook TimeLine Photo

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Official 2014 Timeline Image

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2013 Timeline Contest – WINNER

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2013 Timeline Contest – 2nd place

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2013 Timeline Contest – 3rd place

1. Right click on the picture above and save it to your desktop. Apple users can simply drag the picture to their desktop.
2. Open up your personal page on Facebook.
3. Move your mouse over the lower right of your timeline picture until the link “Change Picture” pops up. Click “Choose File” and select the awareness month picture on your desktop.
4. Post an announcement that IC Awareness Month has begun in your status

August 18, 2014
by icnjill
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Download and share the 2014 IC Awareness Month Poster

Help Put Our IC Awareness Poster in Thousands of Doctor Offices

Official IC Awareness Month Poster  2014One of the ways that we raise awareness about IC is through our IC Awareness Month Poster Campaign. When they are displayed in doctors offices, it reminds clinicians that IC is real and patients that they are not alone. The problem, of course, is that we don’t have a big pharmaceutical company paying to print up posters and mail them to doctors.

So, IC Awareness Month is the epitome of patient activism. We need to get these posters out and up and that’s only going to happen if you, the IC patient, are willing to get involved. It’ll only take a minute to print it out (costing you no money at all other than paper and printer ink) and then either drop it in the mail or hand deliver it to your doctors offices. You can print out as many as you want! The more the merrier. IC Optimist subscribers can also cut off the back cover of their Summer 2014 issue and use that as a poster. It’s glossy and beautiful!

If you’ve got some extra $$ to spend, you can also give the file to a local printing company and ask them to enlarge it. Our printing company, for example, is charging $15 for an 18″ wide larger poster.

Where you put IC Awareness Month Posters

Most locations are respectful of and encourage health awareness campaigns. Ask them first if they will post it and, if not, save it for another location that will. Once it’s up, please take a picture of it up on the wall and send it to us, or tweet (@icnjill or @icawareness) or Facebook it!

  • Doctors offices
  • Health clinics
  • Hospitals
  • Libraries
  • Community Bulletin Boards
  • School Nursing Offices
  • Coffee Shops

About This Years Poster

This year’s poster speaks to the intent of this years campaign. It features a man and a woman who are holding a heart over their pelvis. The hearts say “We Stand Together.” But they also each have a tear on their face, showing just how painful IC can be. This beautiful poster was created by IC patient Jennifer Williams and was the first place winner in our 2013 Poster Contest. Thanks Jennifer for this iconic image!

Download IC Awareness Month Poster

Download a PDF file of our IC Awareness Poster here!

August 15, 2014
by icnjill
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IC Awareness Month 2014 Poster Contest

Bring out your inner artist and create a poster for IC Awareness Month sharing your own interpretation of life with IC. Have you children make their own poster with your choice of medium: digital, watercolor, crayon, markers! Your choice!

All posters will be added to our website and the winners will receive $100, $75 or $50 gift certificates from the ICN Shop! This year’s official poster is the winner of the 2013 poster contest!!! Thus, your entry could be selected and appear in doctors offices around the country next year!

Requirements:

#1 – It must say IC Awareness Month and inclued the URL: icawareness.org

#2 – It must be large enough to fit on an 8.5 by 11” piece of paper. Digital or paper entries are welcome!

Entries should be submitted by email to: info@icawareness.org
or by US Mail to: IC Network, 5636 Del Monte Court, Santa Rosa CA 95409

Entry Deadline: September 30, 2014!!

Here are some of last years entries to inspire you!

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poster-kaceybruce-200poster-nicolejohnson-200poster-melissagleason-200poster-johnhenderson-200Tish Ali IC Awareness Month Poster

August 15, 2014
by icnjill
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IC Awareness Month 2014 Facebook Timeline Image Contest – Winners will receive $100, $75 or $50 gift certificates

Calling all IC artists! Social networking fanatics! The 2014 IC Awareness Month Facebook contest is officially underway. Last year, we had some fabulous entries and I know that this year will be even better. What we’re looking for is an image, collage, drawing that shares your story of life with IC for use as a Facebook Timeline Image. All languages welcome!

Your entry must:

#1 – Say “IC Awareness Month” and include the url icawareness.org

#2 – It should be 850px wide by 315 px high

#3 – It should be either a .jpg, .gif or .png file!

To enter your image, please email the file to: info@icawareness.org

Here are some of last years entries to give you some inspiration!

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cayleeott

hugomendex

anaperez

August 12, 2014
by icnjill
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2014 Proclamation

One excellent way to raise awareness for the issues that interstitial cystitis patients face is by asking your local City Council, County Board of Supervisors, State Legislators or US Senators & Congressmen to issue a proclamation on behalf of IC Awareness Month. We’ve made this super easy with a downloadable file you can print out and send, with a letter, to your choice of politician. Download the 2014 Proclamation Here!

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IC Awareness Month Proclamation

Whereas, 3 to 8 million women in the USA and 1 to 4 million men of all ages suffer the devastating effects of this chronic pelvic pain disorder; and

Whereas, many physicians are unaware of the symptoms and effects of interstitial cystitis/bladder pain syndrome, causing patients to suffer for years before they obtain a correct diagnosis and medical treatment; and

Whereas, medical research efforts into interstitial cystitis/bladder pain syndrome have yet to discover the cause nor cure for this disabling medical condition and federal research money has been severely reduced; and

Whereas, there is a critical need to educate and support individuals and families affected by interstitial cystitis;

Now, Therefore, Be It Resolved that September 2014 is hereby designed as Interstitial Cystitis Awareness Month during which patients, support groups and organizations call for increases in public and private sector funding for medical research, targeted educational programs for health professionals, patients and the public and recognition of urological disorders as a significant public health issue.

Proclaimed This Day, September 2014

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August 12, 2014
by icnjill
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2014 IC Awareness Month Poster, Facebook Profile & Timeline Images

IC Awareness Month is just three weeks away and we’re adding the latest images! Our official 2014 campaign poster and Facebook icon was the winner of the 2013 IC Awareness Poster Contest. Artist and IC’er Jennifer Williams has contributed a fabulous and memorable image that works beautifully with this years them “For Years We Suffered In Silence, Now We Stand Together.”

New Facebook Icon

To use this image on your Facebook or other Social Networking accounts, just right click the image and save it to your desktop. Then upload as per Facebook’s instructions. Easy Peasie!

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You can also use the one we created last year if you’d like. We think it’s awfully perfect too!

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New Poster

Please download and print this poster and share with your favorite medical care providers, community bulletin boards and so forth. It’s also the back cover of our Summer IC Optimist Magazine where it can be used as you see fit! Download the full size PDF here!

Official IC Awareness Month Poster  2014