News & Events 2010 — 2011


The fifth HEGP (Hopital Europeen G Pompidou) meeting on FMD was held on October 21st, 2011. This annual meeting brings together physicians from Bordeaux, Caen, Clermont-Ferrand, Grenoble, LilleSaint-EtienneMarseille, Nancy and Toulouse participating in a national network on FMD.

 

The French network in coordinated in Paris by PF Plouin (Hypertension Unit, HEGP), EMousseaux (Department of Radiology, HEGP), and E Touzé ( Stroke Center , Hopital Saint-Anne, Paris). A registry designed to document phenotypic and genetic traits in patients with renal and/or cervical artery FMD is used for a national cohort study evaluating the progression of FMD lesions and for pathophysiological and genetic studies.

 

J Olin and P Mace (USA), as well as P De Leeuw (The Netherlands), A Morganti ( Italy ), and A Persu ( Belgium ) were invited to participate in this year’s meeting in order to exchange information and data and to consider harmonizing the US and the French registries. This would be a first step for organizing cooperative or complementary studies in this rare condition.

 


1st Annual US Conference on Rare Diseases and Orphan Products:

The FMDSA was represented by Lisa Foster, volunteer, at the NORD conference in Washington DC. The conference was held October 11-13th at the Omni Shoreham Hotel. The DIA, Drug Information Association and NORD, National Organization of Rare Disorders, presented a $1000.00 scholarship to the FMDSA to be used towards the meeting expense.  To view the PDF document, please click here.

 

Spreading the Word

New Jersey ABWA Chapter hosts meeting, focuses on good cause!
by Cheryl Bailey

The Atlantic City Charter Chapter of the American Business Women's Association recently hosted Cheryl Bailey, Vice President of the Fibromuscular Dysplasia Society of America to present her program "Recent Accomplishments of the FMDSA" during the Chapter's September meeting, held in Egg Harbor Townshipm NJ.  Mrs. Bailey detailed the society's launch of an International Patient Registry for patients with FMD, through the University of Michigan, which centers are participating, and what data is presently available.  Annual renewal of membership was stressed by Mrs. Bailey, and the ABWA members were given the website address for renewing their membership and finding out more on FMD.  The Chapter awarded Mrs. Bailey with a $100.00 check to FMDSA, which was immediately matched by ABWA member Virginia Quickmire for a $200.00 donation that evening.

Patricia Hackett, President ACCC/ABWA (left); Cheryl Bailey, VP FMDSA (right)

 

Napa Valley Fundraiser

The California fundraiser was a great success!!!!!  This wonderful raffle  organized by Betty and Bob Conway and Mimi Petersen was for a three night four day stay for two in a cozy cottage  donated by Bob and Betty Conway  (http://ourcountrycottage.org/).  In addition to the stay the winner won a gift certificate for $100.00 to a fine Napa eatery, a bottle of BV's George's De Latour Private Reserve Cabernet , golf for two at Napa Valley Golf Club, Tickets for two on the Napa Valley Wine Train.  Congratulations to the winner,  Donna Lanza from Lake of the Pines, California and her husband Larry.  A special thank you, to Dr John Laird of UC Davis for participating and pulling the winning ticket!

 

Rare Diseases in the News. A special insert in the Washington Post this week highlighted rare diseases, the need for more treatments, and the challenges of having a rare disease. To view the article published by the Washington Post July 2011, please click here.

FMD: An Overlooked Diagnosis
Our thanks to Jodi Roth and Dr. Jeff Olin for the highly informative video clip and story about Fibromuscular Dysplasia, as reported by "myFOX New York". Please click on the photo to read the story and see this excellent video about Jodi's experience with FMD and Dr. Olin's discussion of treatment and diagnosis.

FMDSA at the ASE Vascular Imaging Symposium 
Kudos to Cheryl Bailey, Cecile Pileggi and Dr. Olin for spreading awareness at the ASE   Vascular Imaging Symposium in Philadelphia on October 9th, 2010. Dr. Olin scanned   Cheryl as part of their "hands on" demonstration of FMD, and all helped to explain to the many interested parties who visited the FMDSA table at the event.

FMDSA Visits UC Davis Vascular Center
Pam Mace and FMDSA volunteer Mimi Petersen visited the UC Davis Vascular Center and met with medical director Dr. John Laird and his staff to discuss care for patients with FMD, the FMD patient registry and ways to help raise awareness about this disease. 

 Dr. Laird and his team at the UC Davis Vascular Center are committed to helping patients with FMD and are proud to collaborate with FMDSA as a West Coast center serving patients with fibromuscular dysplasia. They are very motivated and we look forward to working with them. To learn more about this center click here. We would like to thank UC Davis for sponsoring our Annual Meeting this year in Cleveland, Ohio.