FMDSA News - Spreading the Word Wall Street Journal - "The Rare Disease That Isn't" We have very exciting news that we want to share with everyone. An article on FMD made front page news in the Wall Street Journal this past Saturday. This is the first time FMD has been highlighted in the National media. Circulation for the Wall Street Journal exceeds 2 million and FMD was highlighted on the front page! This is the greatest opportunity to date to spread awareness of FMD and we hope you share in our excitement. Click HERE to read full article click image to view PSA videoclip Fibromuscular Dysplasis PSA Thank you to Terri Provost-Daar and Brad Daar as well as Dr Jeffrey Olin for their efforts in having a highly effective Public Service Announcement made about Fibromuscular Dysplasia. So far this PSA has been shown on local cable stations in CT and Ohio and is available for anyone who wants to help promote awareness about Fibromuscular Dysplasia. If you would like to approach your local cable television station or area service group or hospital to show this informative clip, please contact Chrissy Gribble at chrissy.gribble@fmdsa.org. Fibromuscular Dysplasia in the Fredericksburg News Thank you to Kathy Beaver for helping to spread awareness. Kathy contacted her local newspaper, The Free Lance Star, and on August 2, 2009, her story was published on the front page under the title: "Nurse Surprised by Unusual Diagnosis". The story was also published on The Fredericksburg.Com. Way to go Kathy, for taking the time to get the word out about FMD! Click HERE to read full article   Kidney Beginnings Magazine - May 2009 - The FMDSA's Pam Mace RN and Dr. Jeff Olin had an article published in a recent issue of Kidney Beginnings Magazine. The article includes general information on FMD. Be sure to read the article: "..FMD is often underdiagnosed and undertreated leading to the misconception that it is a rare disease." (click image or header).   New York State Association of School Nurses: "Communicator" (Winter 2009)- Read the article that was published in a recent issue of the Communicator, by Kari Ulrich. The article discusses Fibromuscular Dysplasia in general, and also how school nurses can play a critical role in diagnoses of FMD. and how school nurses must not minimize the important role of blood pressure screening as a tool that can be easily used for diagnosis.   International Stroke Conference 2009 - Pam Mace and Chrissy Gribble just returned from the International Stroke Conference in San Diego. Two patients from the area Cindy Wong and Karen Schiff also attended for a day and were able to talk with physicians, nurses, firemen and paramedics educating them about their disease. The most common responses from physicians were either "it's a rare disease" or "it's not rare at all- I have lots of patients with the disease". Most nurses had never heard of fmd and one nurse who has the disease did not know about FMDSA. We encouraged the nurse educators to add fmd to their stroke material as a cause of stroke and they all responded that they would. Doctors were amazed to find out about the Patient Registry and wanted to know how their facility could participate.   Mystery Diagnosis Update - On February 13th-15th, Discovery Health Chanel's "Mystery Diagnosis" team was in Cleveland to film Pam Mace's story. The first day of filming was conducted at the Cleveland Clinic to recreate events that lead to Pam's diagnosis. The second day of filming was completed in studio, with interviews with several people including Dr. Jay Yadav from Piedmont Hospital in Atlanta. Dr Yadav was who first diagnosed Pam with FMD in 2001. The third day of filming was held at Pam's daughter's home in North Olmsted, Ohio, and her family was also able to partcipate. An air date has not yet been established, but will be posted as soon as we are informed. We would like to thank the Cleveland Clinic for allowing filming to be done at their facility.  The episode aired September 10, 2009. Please keep an eye out for repeat airings (and will be aired internationally at a later date). This episode will eventually also be available for purchase on iTunes.   WKYC TV Interview- Watch the video clip of the interview of Pam Mace by Monica Robbins and see how Pam is continuing to spread the word. It would be great to see other FMD patients contact their local media as well! .    Crain's Cleveland Business - Pam Mace is interviewed in a story that appeared in the Crain Cleveland Business Newspaper on Tuesday, February 24, 2009. The American Nurses Association have also linked this article to "Smart Brief". Thanks Pam, for all your efforts in spreading awareness of FMD.    Keeping In Circulation - Summer 2008 - "Keeping In Circulation", the official publication of the Vascular Disease Foundation featured a fabulous article on Fibromuscular Dysplasia and the difficulty often, with getting a diagnosis. Pam Mace shared valuable information in hopes of furthering awareness in the community responsible for vascular disorders. Pam's incredible story is included, if you haven't yet read it, please take a moment to do so. It is a testament to how important it is to listen to our bodies, and be be our own best healthcare advocates. Like Pam, it's important for all of us who are familiar with FMD to continue to spread the word. Click image to download the full article. The Americam Stroke Association Recognizes Fibromuscular Dysplasia as a Cause of Stroke We did it! Yes, FMD is now recognized as a cause of stroke by the American Stroke Association. They did a wonderful feature article with our own Pam Mace on the cover with additional stories of FMD patients inside.The "Stroke Connection" magazine also gives a detailed description of FMD for patients, physicians and healthcare providers. The response to the article is overwhelming and we are greatfull to the American Stroke Association for their recognition. Get a copy of the magazine today! The Cleveland Clinic has released an article on FMD from our own Dr. Olin.Check out the PDF here CathLab Digest (September, 2007) focused on Fibromusular Dysplasia. Yes, we've gotten the word out to our diagnostic friends. Check out the entire article HERE Mimi Petersen, Dr. Kevin Meyers, and Susan Bell represent FMDSA at the ASN conference in San Francisco... more Lexi Martinez is an active, outgoing 7-year-old. At the age of 5, she was`diagnosed with fibromuscular dysplasia (FMD). Get the entire article here. Check out Cheryl Bailey's article on FMD complete with her own scans MORE AWESOME article on FMD from our own Dr. Meyers making the cover of Cath Lab Digest. click here for the pdf National Stroke Association Honors FMDSA President In the November/December 2006 issue of StrokeSmart Magazine, FMDSA Board Chair, Pam Mace is featured as the NSA’s Champion of Hope. Pam is honored for “pioneering awareness of Fibromuscular Dysplasia”. The article documents her journey from being diagnosed with Fibromuscular Dysplasia at age 37 to her being named President of the Board of the FMDSA seven years later.  Pam joined the FMDSA in 2004 and has been representing our organization in its campaign to broaden the medical communities understanding of FMD which will ultimately result in improved diagnosis and treatment of Fibromuscular Dysplasia. Florida Fundraiser nets more than $12,000 Ms. Deborah Koehler, well known in Tampa Bay, Florida for her work in the real estate industry, hosted an invitation-only dinner party to raise funds for the FMDSA.  The event was held in honor of her good friend and FMDSA board member, Cheryl Golden. Stroke Specialist, Dr. Rob Taylor from Tampa General Hospital attended the dinner and spoke with many of the guests answering their questions about FMD.  Board President, Pam Mace, presented a brief talk about FMD and the mission of our organization.  Food and beverages were donated by Tom Golden.  The event raised a record $12,000 for Fibromuscular Dysplasia research and awareness.  This is the highest total raised for FMDSA by a privately held fundraiser.  For Cheryl Golden, the hightlight of her evening was not just the great success of the event, but that she shared the evening with three other ladies, Pam Mace, Susan Bell and Tracy Hanlon, who also have FMD.  Our gratitude to Deborah Koehler for hosting this wonderful event. FMDSA Member Makes Tremendous Strides for FMD Awareness Ronni Herrick had a busy October.  Both Ronni and her mother, Ruby Lomke, have FMD and they have a story to tell. Ronni wanted to raise awareness of FMD in her community of Gainesville, Florida so she contacted her local newspaper and asked to tell her story. Diane Chun, a staff writer for the Gainesville Sun, was interested in hearing what Ronni had to say. The October 16th issue of The Gainesville Sun features an interview with the two women about their experiences of being first diagnosed with this disease (Ruby was diagnosed first) and how they both have learned to live with the challenges that come with it.   The newspaper sells approximately 53,000 copies a day and is read by multiple persons in some households. You can read Ronni and Ruby’s story at www.gainesville.com, October 16th, 2006 issue. Ronni certainly met her goal to raise awareness of FMD but she didn’t stop there. On Friday, October 27, she and her husband decided to visit their local ABC station WCJB-TV 20. She got the attention of Reporter, Gavin Johnson who asked to interview her and Ruby. The ladies were interviewed on film in their home on Sunday October 28th and the segment aired on the 6:00 p.m. news as well as a repeat broadcast the following morning. But wait, there is more! While visiting a friend’s art gallery, Ronni met Susan Maynard, an event coordinator for the High Springs Florida Home and Garden Show. She casually started to share her recent media experiences with Susan when Susan offered to give Ronni an exhibitor’s booth at the Home and Garden Show if Ronni would, in exchange, speak at the event. This was Ronni’s first public speaking experience and she says that she’d do it again in a minute. Hat’s off to Ronni and Ruby for their extraordinary efforts and for speaking so candidly about their personal experience of living with FMD. CONTINUE TO PAGE TWO