Save the date May 20th for the 10th Annual Meeting on Fibromuscular Dysplasia being held in Cleveland, Ohio at the Wyndham Hotel in Downtown Cleveland.

 

  

 

 

 

 

Thank you to our 2017 Meeting Sponsors!

 Silver Sponsor                                                                 

 

Bronze

               

 

Topics  include:

"Understanding Fibromuscular Dysplasia"

"Update on the United States Registry for Fibromuscular Dysplasia"

"Genetics and Fibromuscular Dysplasia"

"Aneurysms and Dissections in FMD"

"Update from the International Research Network Group"

"Treating Fibromuscular Dysplasia"

Topics are subject to change. Stay tuned for more details. Regsitration will open January, 2017

                                                                     

Presentations from past meetings.

Dr. Esther Kim presented "Fibromuscular Dysplasia 101." To view her PowerPoint presentation, please click here. Dr. Kim did a wonderful job of explaining the basics of FMD, and she included great images in her presentation that are very helpful to give you a better understanding of the disease.

 

 

To view Dr. Jeffrey Olin's presentations, click here. Dr. Olin's presentation includes "An Introduction to Clinical Research" and information on the Mount Sinai Heart Center for Fibromuscular Dysplasia Care and Research. Also included is Dr. Olin's presentation "What We Have Learned About Fibromuscular Dysplasia."

 

 Dr. Gornik presented her FMD Jeopardy, which everyone loved! It is always very informative and it's amazing how well the audience does. Dr. Gornik also included in her presentation information about her FMD Clinic and the Scientific Meeting scheduled for 2014 "Research Roadmap for Fibromuscular Dysplasia" To view Dr. Gornik's presenations, click here.

 

Dr Alan Matsumoto: "Minimally Invasive Treatment of Renal Artery FMD"
Lisa Shelanskas: "Presenting to the Emergency Room and Calling 911"

 

 

 Speaker Emma Greenwood, Founder of Whooshers.com shares her experience from the Annual Meeting: On the heels of presenting at the FMDSA Conference in Cleveland, I thought I’d sum up my experience and point out some highlights from it, especially for those Whooshers diagnosed with FMD who were unable to make it to the event. 

Since I am not a doctor, my talk was focused on what I’ve learned from my doctors and my growing community of fellow whooshers.  My talk was titled, "What is a Whoosh?" Of course, many people at the conference already knew what a whoosh was.  Several of the medical presenters included pulsatile tinnitus in their slides.  Indeed, toward the end of the conference there was a quiz, and one of the questions was “Was is Pulsatile Tinnitus?”  The entire room – 100% answered correctly!  Hooray for awareness!

Awareness was the major theme of my presentation.  To whooshers and their doctors, awareness means learning that the whoosh has a name: pulsatile tinnitus.   Awareness means appreciating that pulsatile tinnitus is not regular tinnitus (ringing in the ears).  Awareness means being informed about the long list of possible pulsatile tinnitus causes and realizing that the answer is not often as clear as you hope.  Awareness means playing an audio file that sounds like your whoosh (available on Whooshers.com) for your loved ones and doctors to hear.  Awareness is important whether you are a patient or a medical professional treating one.

And for patients, specifically, awareness also means knowing that you’re not alone.  Awareness brings what seems out of our control back in our control.  To be in a room of patients, doctors, nurses, medical researchers in the name of bringing awareness, together, to one of the possible causes of pulsatile tinnitus was a gratifying feeling.  If you’re a Whoosher you understand.  For many whooshers, experiencing pulsatile tinnitus can be stressful, alienating, and scary, but knowing that you’re not alone often helps us deal with it a little better and move more steadily toward finding answers.  Awareness is an important - even essential - element of diagnosis and treatment. 

It was apparent at the conference that awareness brings exciting opportunities on the medical front, too, and that there are wonderful, enthusiastic, skilled doctors who have focused their careers on the effort to find answers, because they know how much their patients deserve answers.  Sometimes it is difficult for Whooshers to find medical professionals who will go the extra, necessary mile to help patients with unusual symptoms, but they are out there and they deserve more attention.  Several of them were at the conference and their enthusiasm was in the spotlight that weekend.  I was proud to get to know them and their work.   

There was much to learn about pulsatile tinnitus in relation to FMD, including some facts I had not been aware of.  For example, one doctor reported finding, via extensive research, that a larger number than previously thought of patients with FMD in recent studies have reported experiencing pulsatile tinnitus.  Another doctor played an audio file of a whooshing sound.  I was sitting toward the back, and as I looked around I saw some people – whooshers, presumably - nodding their heads.  So it wasn't a big surprise when, during my presentation, I asked everyone in the room to raise their hand if they could hear the whoosh in the room - and many did.

For all the negative things that a whoosh can be, there are also the positive.  Sometimes the whoosh is the only sign of a condition that requires treatment… if it weren’t for the whoosh, the condition may never be noticed.  For some of us, the whoosh brings us to a closer understanding of our body and how it works.  It helps us meet people we wouldn’t have met otherwise.  If it weren't for my whoosh, I probably would've never learned about FMD or met any of the nice people at the conference or the medical professionals who do so much to support them.

So, on behalf of Whooshers with FMD and without, I was proud to be at the FMDSA conference this year.  To be in a room with fellow patients, their loved ones who support them, doctors, nurses, researchers and other medical staff, was inspiring.  Just think, if people impacted by every condition –rare or not- could have the opportunity to gather and talk and learn (and whoosh, if applicable!) together, how much could be accomplished.

Sincere thanks again to the FMDSA for inviting me to the annual conference this year, and congratulations to your community for all you do to raise FMD awareness.

 

Shuttle from the Hotel to the Cleveland Clinic

For those of you that have appointments at the Cleveland Clinic the week of the meeting the Wyndham Shuttle to the Cleveland Clinic during the annual conference week. For guests who have specific appointment times at the clinic, shuttle reservations are recommended to ensure that the appointments are kept in a timely fashion. Shuttle reservations are taken 24/7 with the Front Desk and can be arranged up to one-month in advance. Call the hotel directly at 216-615-7500