7th FMDSA Annual Meeting in Cleveland Ohio May 17th, 2014
Dr. Stephain Bebette, Paris, France - "FMD and Spontaneous Cervical Artery Dissection"
Professor Pierre-Francois Plouin, Paris, France - "The French FMD Patient Registry Findings"
Professor Xaiver Jeunemaitre, Professor of Genetics at HEGP, Paris, France - "Ongoing French FMD Research Projects"
Please check back as we will be announcing additional speakers very soon.
For those of you arriving early Friday if you would like to participate in the Cleveland Clinic Art Tour, which is free, please contact Maureen Womack at firstname.lastname@example.org. While at the Cleveland Clinic you may also want to consider participating in their Bio-Repository by donating blood. For more information on participation please contact Pam mace at email@example.com
2013 ANNUAL FMDSA CLEVELAND CLINIC ART TOUR
Thank you to Deborah Sherwood at The Cleveland Clinic Art Program for organizing our annual FMDSA Cleveland Clinic Art Tour with Ann Austin again this year. We had such a wonderful time exploring the beautiful and thought provoking pieces of art through out Cleveland Clinic Hospital. These treasures are displayed on walls, floors and high above dangling from the ceiling of this fantastic facility. Ann’s knowledge of the art work along with group participation created for continuous dialog the entire tour. Here is a link from The Cleveland Clinic Hospital Art Program on some of the art pieces we had the pleasure of seeing. This link is an audio/visual link and gives a great description of the art and the artists point of view while creating their piece. Click on the box with the purple in it, sit back, relax, and see some of the impressive collection.
The highlight after our tour was the usual stop by The Heart and Vascular Center to visit Dr. Gornik, Dr. Kim, and their staff. I can still see their smiling faces and feel the rush of energy as they all came out to greet us and take a photo. Dr. Gornik was carrying a huge pile of FMD brochures for us to take back for the conference and they all said “Good bye, see you tomorrow at the conference,” as they left to get back to the patients they were treating. It was reported at the conference that they saw 33 FMD patients in 3 days.
We all had such a wonderful time that I believe we may need to make this a whole day event and add the art museum before the art tour! See you all next year!
FMDSA 2013 raffle, what an event!
The annual FMDSA raffle held immediately after every conference was organized and choreographed this year by Mary Jo & Dan Bajc and their family. Mary Jo worked for many months gathering donations from members and soliciting from local corporations. The display of raffle items presented that Saturday evening was honestly a sight that we had not expected nor had ever seen before at any raffle. There was something special for everyone to choose from: elaborate gift baskets (Wine, Bath & Body, Zoo, Carwash, Man World), Tools, Grills, iPads, Garmin GPS Units, Jewelry, Electronics and much more.
Mary Jo approached Pam last year requesting the task of organizing the raffle. This task was a job that multiple volunteers together performed in previous years and it took days to wrap and display the items. Watching Mary Jo, Dan and their family manage the raffle that evening was like watching a beautiful dance. Their talent, dedication, love and support for the FMDSA is truly appreciated and made for the most impressive raffle for our 10th year anniversary. Thank you Mary Jo & Dan.
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.
A note from speaker Diane Dorman, representing the National Organization for Rare Diseases."It was my distinct honor to have the opportunity to meet so many dedicated people focused on the treatment and cure of fibromuscular dysplasia. I am always in awe of the power patients and their families hold in their hands to drive basic and translational research as well as clinical studies for the development of promising therapies."
Since 1983, the National Organization for Rare Disorders (NORD) has striven to raise awareness of the challenges faced by people living with rare diseases. Our hope is to see a nation where people with rare diseases can secure access to proper medical care, diagnostics and therapies that extend and improve their lives, as well as foster a social, political and financial culture of innovation that supports the basic and translational research necessary to create effective therapies for all rare disorders. But these goals cannot be achieved in a vacuum.
The entire rare disease community representing over 7,000 known rare conditions must band together to increase awareness about the importance of rare disease research and orphan product development. The rare disease research being conducted today will undoubtedly have an impact on diseases that affect far wider patient populations tomorrow.
"Alone we are rare. Together we are strong."
Diane Edquist Dorman
Vice President, Public Policy
National Organization for Rare Disorders
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.
Save the Date May 17th, 2014 for the 7th Annual Meeting
The meeting will again this year be held at the Wyndham Hotel in downtown Cleveland, Ohio. Book early as the hotel has sold out the last two years. Please contact the hotel directly and mention FMDSA to receive a discounted room rate of $119. 216-615-7500