FMDSA Annual Conference  


 

The 12th Annual Meeting on Fibromuscular Dysplasia is being held in Cleveland, Ohio on May 18th, 2019

Each year we gather the leading specialists to come and speak about FMD. This is one of the most beneficial meetings anyone interested in learning more about FMD can attend. During the meeting you will learn about the most recent developments in FMD management along with hearing specialist discuss their most recent understandings of the disease.

Not only will you hear from specialists, but you will also be able to speak with them directly in open panel discussions. These open panel discussions give you the opportunity to ask specialists anything that may not have been answered during the presentations. 

You will also have the opportunity to meet others with FMD. If you or a loved one has FMD, it can be hard for others to understand things you may be dealing with in relation to the disease. Being able to connect with others who can relate, can help with your ability to cope with FMD by know you're not the only one and others may provide you with their tips and trick for dealing with certain issues (always consult with your physician prior to applying any of the recommendations).

More information about the 12th Annual Meeting coming soon! To see more information on past meetings see below.


 

We would like to thank all of our 2018 sponsors for their support:

Presenting Sponsor - Massachusetts General Hospital

Platinum Level Sponsor - Baptist Hospital of Miami 

Gold Level Sponsor - Cleveland Clinic 

Silver Level Sponsor - University of Michigan 

Bronze Level Sponsor - Rare Disease Legislative Advocates 

                                                    Emory Healthcare 

                                                    University of Virginia Health System 

                                                    Vanderbilt University Medical Center 


 

Here is a recap of the 2018, 11th Annual Meeting!


Thank you to all of our 2018 speakers!

  • Dr. Jeffrey Olin - Mt Sinai: New York, New York
  • Dr. Heather Gornik - Cleveland Clinic: Cleveland, Ohio
  • Dr. James Froehlich - University of Michigan Health System: Ann Arbor, Michigan
  • Dr. Barry Katzen - Miami Vascular Specialists: Miami, Florida
  • Dr. Santhi Ganesh - University of Michigan Health System: Ann Arbor, Michigan
  • Dr. Bryan Wells - Emory Healthcare: Atlanta, Georgia
  • Dr. Gabor Toth - Cleveland Clinic: Cleveland, Ohio
  • Dr. Esther Kim - Vanderbilt University Medical Center: Nashville, Tennessee
  • Dr. Alexandra Milspaw - 4Directions Counseling, LLC: Bethlehem Pennsylvania
  • Pamela Mace, RN - FMDSA

Some of the topics covered during the 2018 Annual conference (in order of presentation):

  • FMD Basics - Dr. Wells
  • SCAD: An Overview of the AHA Scientific Statement - Dr. Kim
  • The (R) Evolution in Our Understanding of Fibromuscular Dysplasia: My Professional Journey - Dr. Olin
  • Genetic Research of FMD - Dr. Ganesh
  • International Symposium, Consensus Paper and FMD Registry Update - Dr. Gornik
  • Registry Research and What We Can Expect - Dr. Froehlich
  • Technical Aspects of Renal Artery Angioplasty - Dr. Katzen
  • What is the Likelihood that Blood Pressure will be Cured with Renal Artery Angioplasty - Dr. Olin
  • Treatment of Cervical Artery Dissection and Intracranial Aneurysms - Dr. Toth
  • Training the Brain to Heal Painful Habits - Dr. Milspaw

 

Here are some of the topics covered during 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 presentations, 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.