News & Events 2008 — 2009
"The Rare Disease That Isn't" -Wall Street Journal
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.
Fibromuscular Dysplasia 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 firstname.lastname@example.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!
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."
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 participate. 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.
Crain's Cleveland Business
Pam Mace was 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.