News Updates

Our thanks to Sharon Casey and Jordan Avery for contributing their work to the "When Pain Is a Monster" article in the Winter 2010 issue of the ICA Update and for donating these artworks for an ICA fundraising auction.
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About 200 patients, families, friends, and healthcare providers gathered virtually for a free educational webcast held the evening of Tuesday, August 10. Panel presenters included Robert Moldwin, MD, Matt Rosenberg, MD, and patient advocates Linda Salin, Teresa McCoy, and Kevin Noa.
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Good news. Thanks to everyone's advocacy and letter writing efforts, the Senate has included the requested IC federal funding at the $660,000 level in the fiscal year 2011. However, the process isn’t quite over yet. For the next step, the final budget goes to “committee” to resolve the differences between the House budget bill and the Senate budget bill. During this time, we will be asking all of you to once again remind your government representatives why this funding is so important. For now, if you wrote to your Senators, please send a quick thank you note letting them know how grateful you are that the IC-dedicated funding was restored in the fiscal year 2011 budget. If you did not get to write to your representatives in the last few weeks, don’t worry—it is never too late. Send a note today with your story and how important it is ensure dedicated IC funding.

Additional good news is that funding for the National Institutes of Health has been increased to the level of $32 billion, which is a $1 billion increase over the fiscal year 2010 budget. Congratulations to the entire IC community for your tremendous advocacy effort!

Not even a torrential downpour could dissuade a group of committed advocates from raising awareness about IC at the July 10 Camden Riversharks baseball game in Camden, New Jersey. Event organizer Lauren Snyder, a 29-year old IC patient and special needs teacher, watched the skies anxiously as heavy thunderstorms pounded the area.
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The Society for Women’s Health Research (SWHR) brought together a group of passionate women’s health and urology advocates for a briefing titled “The Bladder Matters: What Women Need to Know” on Thursday, July 15.
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Congressional representatives, legislative staff, and patient advocates gathered this past Tuesday, July 20, to celebrate a historic event—the elevation of the National Center on Minority Health and Health Disparities to an Institute at the National Institutes of Health (NIH).
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We need your help to protect critical federal programs benefiting the IC community.

Continued funding is in serious jeopardy. The U.S. Senate is set to mark up its fiscal year 2011 spending bill. This bill funds NIH research studies and the CDC IC Education and Awareness Program.
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Our thanks to Sharon Casey and Jordan Avery for contributing their work to the “When Pain Is a Monster” article in the Winter 2010 issue of the ICA Update—and for donating these works for an ICA fundraising auction.

Be on the lookout for more details about the first ICA eBay auction, which will be held for one-week only—starting August 18 and ending August 25.

Join the fun, help the cause, get a tax write-off, and enjoy artwork created by two accomplished artists living with IC!

Minna Schrag, who has played a pivotal role in guiding the ICA for the past 6 years, retired from her position as Board Chair. Long-time Board members Eric and Barbara Zarnikow have been elected to succeed her as Co-chairs. "I am thrilled by how strong and effective the ICA is, with expert leadership from Barbara Gordon, the terrific staff, and the dedicated Board.
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A new online portal, a place to find insurance options in your state, www.HealthCare.gov, went live this week. Featuring information that used to be difficult to find, this new resource makes it easier for you to shop for insurance options and find out about benefits resulting from the new healthcare law.
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The American Pain Foundation is hosting a free webinar for healthcare professionals on unintended overdose of opioid prescription medicines. Agenda items include information on deaths associated with overdose from prescription opioids, practices for safe opioid prescribing, and tools to help integrate opioid prescribing guidelines into patient care. This one-hour, webinar will be aired five times. Learn more at www.safeprescribing.com, or view the webinar invitation.

The ICA office will be closed Monday, July 5th in celebration of the Independence Day holiday. ICA online resources are open 24/7: 

• www.ichelp.org – Sign up for free updates via the ICA e-Newswire
• ICHelp YouTube Channel – Subscribe and get alerts about newly posted videos with IC experts
• IC Facebook Community – Online support at your fingertips
• Twitter.com/ICHelp – Follow reports from meetings
  
  

Planning on attending a red, white and blue shindig? Here’s ten tips from Julie Beyer, MA, RD, about enjoying holiday social gatherings.

Want to help physicians better understand how to help you become an educated healthcare consumer? Ortho Women's Health & Urology™ is looking for IC patients who are willing to provide anonymous feedback on that topic. The findings will be used to help educate physicians about how to have more effective discussions about IC with their patients.
Link to survey.

PS: The Spring 2010 issue of the ICA Update offers lots of great information on this topic.

Keep up to date with the latest in IC research and treatment advances, learn about upcoming IC-related events worldwide, and follow how the ICA is working for you with the ICA e-Newswire. Each Thursday the ICA e-Newswire brings IC headlines to your inbox. It's free, so sign up today! Check out this week's e-Newswire!

ICA Medical Advisory Board member, Robert Evans, MD, discussed IC on Winston-Salem, NC’s WXII Channel 12 noon news last week. As the noon health guest, Dr. Evans reviewed the symptoms of IC, common misdiagnoses in men and women, effects of IC on quality of life, and IC treatment options. He emphasized the importance of both patient and provider education in successful diagnosis and treatment. And, noted that if a particular therapy doesn’t reduce IC symptoms, doctors need to reevaluate with the aim of achieving more successful symptom management and improved quality of life for patients.
Watch the interview.

Trying to get your five-a-day, but concerned about potential pesticides in fruits and veggies? If so, we’ve found a wonderful new resource for you! Check out the 2010 Shopper’s Guide to Pesticides from the Environmental Working Group (EWG), a nonprofit organization educating the public about health and environmental threats.
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During last week’s American Pain Society annual meeting, the ICA learned that the US Food and Drug Administration's (FDA's) opioid risk evaluation and mitigation strategies (REMS) are nearing completion and could be ready as early as this summer.
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We want to know how people who read the ICA Update, visit ICA website, or use ICA services feel about membership with charitable organizations, such as the ICA. Your feedback on this short, 10-minute survey will help us make decisions about the ICA's future. We encourage everyone to respond - both members and nonmembers. Visit www.ichelp.org/PollsSurveys and complete the survey that best describes you: member, former member, nonmember (never been a member). Thank you for helping to make the ICA better.

National Women’s Health Week (NWHW) kicks off this Sunday, May 9, Mother’s Day. Show your mother, grandmother, daughter, sister, or friend that their health is important to you:

• Send the women in your life a free NWHW e-Card.
• Ask them to pledge to put their health first, visit their doctor for a check-up, and celebrate living a healthier life.
  
  

Visit the NWHW website and choose the card you want to send. Embrace the future and encourage your family and friends to live healthier lives together!

Marathon runner, Joe Daczko, of Mantua, Ohio, is recognizable at most races. In the sea of 25,000 runners at the Boston Marathon on April 19, his visibility was no exception; his bright orange t-shirt reading www.ichelp.org—THIS PAIN STOPS, BUT THEIRS DOESN’T, WILL YOU HELP—stands out in the crowd.
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As part of the survey you will also be able to tell us what YOU think might be good to include in an upcoming edition of the Update. We know you have ideas, so let them fly when you complete this survey!

It's that time again, yep, an ICA User Survey. This time about membership, and if you're not a member of the ICA, no worries.  We have a membership survey for you too.  We want to know how you feel about membership, whether with us or any charity organization like ourselves. Just click on the link below that best describes your "membership status" with the ICA and fill it out. The survey takes 5 minutes to complete, but your answers will be infinitely valuable to us.

• ICA Member
• Former ICA Member
• Never Been ICA Member

Calling all IC patients living in the Nashville area: the ICA is looking for 2 to 3 people interested in telling their stories about living with IC to local newspapers in concert with the patient forum in Nashville, TN on June 5. ICA staff will work with interested patients to prepare their stories and connect with the media. Email icamail@ichelp.org for more information. Participants must attend the forum to be eligible to participate in the media interviews.

A small number of volunteers are needed to assist with registration and set-up for the event. All volunteers will get a complimentary registration for the patient forum. If you are interested in volunteering for the event, please email icamail@ichelp.org.

When the ICA originally posted this request in January 2009, the survey was flooded by IC patients eager to help and could not handle the volume of responses and crashed. For those of you who gave up before in frustration, USF reports the online survey tool is now working well. USF is asking people with IC, 18 years or older, to participate in the online survey. The goal of the study is to learn more about the impact of diet on IC. Please allow 30 minutes to complete the survey. It is important research, but the tool also requires patience!

If you didn't make it to Washington for the ICA Capitol Hill walk, don't worry. You can still make sure your voice is heard by visiting your Congressional representatives at their hometown offices (in your own town) and letting them know how important funding for IC is. And visiting your representatives' hometown offices is easier than you might think.Visit www.congress.org to find out where your representatives' local offices are and use our sample letter to get started thinking about what you might say. Contact icamail@ichelp.org if you're interested in making a hometown visit and we'll send you tips about setting up an appointment, as well as talking points for  your visit. 

Want to be on TV and raise awareness for IC at the same time?! Now's your chance! MTV has contacted us to help them find young women, aged 18-29, to be on a True Life episode tentatively called "True Life: I Can't Have Sex". If you are interested in learning more about casting for the show or if you have any other questions, contact the production company Punched in the Head Productions at tlcanthavesex@gmail.com. View the casting flyer here. Let us know if you are going to contact them so we can make sure to contact them about you as well. Good luck!!

IC patients, as well as ICA staff and board members, will gather in Washington, DC this week for the 2010 ICA Capitol Hill Walk. This event is designed to bring members of our community together to educate Congress about IC and this year over 20 people will be traveling from all over the country to be part of it. We'll make sure Congress knows how important it is to raise awareness about this disease and that it is critical to ensure that funding for IC research and awareness activities is included in the federal budget.

If you can't come to Washington you can still make sure your voice is heard this week by writing to your Congressional representatives and letting them know how important funding for IC is. Visit www.congress.org to find out how to contact your representatives and use our sample letter to get started. This week the voices of our community WILL be heard!

Long-time ICA friend and board member Phyllis Greenberger was recognized this month by Woman’s Day as one of fifty women who are “Changing the World.” As CEO of the Society for Women’s Health Research, Greenberger was recognized for her advocacy work yielding more medical research on women’s health issues. Greenberger shares this honor with many other well-known women’s health advocates, including Oprah Winfrey, Hilary Clinton, and Katie Couric. See the full list in Woman’s Day.

Want to know how you can get more involved with the ICA? Want to learn how you can be an advocate for IC? Check out the new “How to Be an Advocate” section of the website to learn how you can start advocating for IC in Washington, in your hometown, or without ever leaving your house!
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Do you buy or sell on Ebay? Well now you can participate in or host Ebay auctions to benefit the ICA!
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The ICA is happy to announce the upcoming release of Interstitial Cystitis: A Guide for Nutrition Educators (Confident Choices® Book), written by registered dietitian and IC patient Julie Beyer, MA, RD. This book is the first publication of its kind, written for registered dietitians and nurses who provide diet counseling to bladder disease patients. Julie is the author of the monthly Diet Bytes column in the ICA e-Newswire. Learn more about this exciting new book.

How can you raise IC awareness this week in less than 5 minutes? Send a quick note to Washington Post Health Blogger Jennifer LaRue Huget about IC and why it’s important to get the word out about it. Mention these statistics to really make your point:

• More than 4 million men, women and children in the US have interstitial cystitis (IC)
• Between 3 to 8 million women and 1 to 4 million men report symptoms of IC
• Estimating conservatively, one out of 77 people have IC. Or, if further research supports the higher prevalence rate, that’s one out of every 28 people
• IC is more common than breast cancer, autism, and Alzheimer’s disease combined—have you heard of it?
• Be sure to include our website address (www.ichelp.org) in your note
  

The ICA Update, a quarterly magazine filled with IC news, spotlight stories, and exclusive IC healthcare provider interviews, is a benefit made available exclusively to ICA members or contributors who give $45 or more per year. If you haven’t received your copy of the ICA Update in a while, but think that you should have, log on to the ICA website to verify your membership status. If your membership is out of date, renew your membership or join the ICA online. Working together we will Conquer IC and Change Lives!

The ICA offices have been closed this week due to extreme weather. With two blizzards crippling the region, ICA staff in the DC area, who have been fortunate to still have power, are doing what they can to respond to emails and phone calls remotely. The US Post Office stopped mail delivery and fulfillment of orders is delayed. Thanks for everyone's understanding as we try to keep operations functioning as mother nature appears to be having an IC flare!

How can you raise IC awareness this week in less than 5 minutes? Invite 5 of your friends to become ICA Facebook Fans. Include a personal message in the invitation and tell them why the ICA is important to you.

On February 5, 2010, the NCCAM Advisory Board held its quarterly meeting in Bethesda, MD. The advisory board outlined three proposed areas of high priority for upcoming research proposals: trials investigating specific natural products; mind/body techniques for encouraging healthy eating, physical activity, and weight maintenance; and CAM therapies for chronic back pain.
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David Burks, MD
18100 Oakwood Blvd
Dearborn, MI 48124
313-586-0163

Ortho McNeil announced a voluntarily recall of certain lots of over-the-counter (OTC) products, including Motrin, Tylenol, Benadryl, and Rolaids. The FDA posted a list of products and affected product lot numbers on their Safety Recalls website. Check the side of the bottle label for the product lot number.
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An international audience accesses the ICA website on a daily basis. Visitors from 190 countries and territories seek online information in diverse languages. In acknowledgement of this international following, we recently updated and expanded the health information offered in Spanish. Housed in the “About IC” section of the website, En español, offers an extensive collection of information about IC including symptoms, diagnosis, treatment, and living with IC. Given the popularity of nutrition information, translations also include information about eating with IC, dietary supplements, and the IC diet food list. Translation services were made possible through a grant provided by the Medtronic Foundation. The ICA website also includes information about IC in seven other languages: English, Chinese (Simplified), Chinese (Traditional), German, Spanish, French, Italian, and Japanese.
Visit En español
Visit Other Languages

Over the past year the ICA updated online content, expanded the website, and established an online social network. And now, with grant funding from the Centers for Disease Control and Prevention, the ICA launched a fresh look and improved navigation on www.ichelp.org!
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The patent for pentosan polysulfate sodium (Elmiron), the only oral medicine that is FDA approved for treating the pain and discomfort of IC, ends this year. As 2009 neared to an end, this reality coupled with a production glitch fueled concerns that Ortho McNeil, the manufacturer of Elmiron, might no longer market the medicine.
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As a member of the National Health Council, the ICA educated Congress on the special healthcare issues of people with chronic conditions like IC and the importance of incorporating five key principles into a national healthcare system...
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Bob Evans, MD, IC specialist, ICA board member, and favorite doctor has joined the Department of Urology at Wake Forest University Baptist Medical Center--and his new practice is up and running! His new contact information is: Robert J. Evans MD, 140 Charlois Boulevard, Winston Salem, NC  27103, (336) 716-4131. 
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Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition and Director of the undergraduate Nutrition Program at Long Island University and a member of the ICA Medical Advisory Board, had been volunteering her time every other Friday to counsel IC patients. In December, Dr. Shorter joined The Smith Institute faculty! She'll be seeing interstitial cystitis patients and also giving expert advice on the nutritional aspects of other urological conditions.
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If you received an email with a temporary username and password for the new website and are unable to log in with it, we are aware of the problem and are working to correct it as soon as possible.  Once we have solved the problem we will let you know via email how you will be able to access your profile on the website.

Thank you for your patience during this transition.

Wishing you a happy, healthy, and joyous 2010.

Millions of people are harmed every year from inappropriate medication use. Many injuries occur as a result of incomplete access to information about a drug, a patient, or the patient’s condition. 

In order to address this the FDA has created a Safe Use Initiative - a program aimed at reducing the likelihood of preventable harm, injury, or accidental intoxication from medication use. As a part of this program, the FDA will be creating posters and other items to help get the word out about safe medication use through pharmacies, doctors' offices, hospitals, and related organizations. Learn more.

Do you have a story about IC to share? Do you want to share your story of hope and success and be an inspiration to others? Well now’s your chance.

The Social Security Administration (SSA) is reviewing the IC disability ruling. They announced in the Federal Register that they published a call for public opinion on the medical criteria for evaluating genitourinary impairments, which includes IC. The Advance Notices of Proposed Rulemaking (ANPRMs) arm of SSA seeks public comments by January 11, 2010. Or if you prefer, email your comments to the ICA at icamail@ichelp.org by January 5, 2010, and we will include them with the public comment we submit.

Over the past year the ICA has been updating educational materials and information, expanding the website, creating an online social network, and refining its vision for the future.
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