matters of heart

september 2015   
by Rachel Martin

On September 5th, 2015, the first dedicated Loeys-Dietz Patient Day outside of North America was held in John Radcliffe Hospital, Oxford, England. 

We were fortunate to have Dr. Hal Dietz and Dr. Bart Loeys join in, along with doctors from different parts of the UK, with medical presentations on the many different aspects of LDS. The day gathered 138 patients, families and interested physicians from the UK, Netherlands, Germany, Ireland and even as far as Los Angeles! 

The day was a huge success, with everyone feeling more empowered and comforted with the growing knowledge and awareness of LDS in the UK. We look forward to exciting things ahead in the UK for the LDS community and hopefully another Patient Day in the future! 

A huge congratulations and THANK YOU goes out to Dr. Alex Pitcher from the John Radcliffe Hospital who pulled the whole event together. Also thanks for all the effort of the rest of the "Team" with whom I had the privilege to work--Maureen Jivani, Max Harris and Ashley Smith.
Counting down to conference... Just 9 months to go! 

Here's something else to look forward to at our 2016 Conference in Baltimore, MD: after a full day of medical sessions on Saturday, we'll wind down at a family-focused party on Saturday night. Imagine a DJ, photo booth, face painting, food and drinks and more. So come ready to party and socialize with old friends and new. And don't forget your dancing shoes!


My name is Anne Accardo.  I was born and raised in New Orleans, LA.  I just made the big 40 in June and I could not be more excited!  My 30s were a mix of the absolute worst and unbelievably best times of my life. 
I was diagnosed with Loeys-Dietz Syndrome in 2008, at age 33.  My fast paced, crazy but still wonderful, post Hurricane Katrina life came to a screeching halt.  My entire aorta dissected one night while out to dinner.  I was airlifted to Houston where my amazing doctors saved my life.  Lucky for me, there is a geneticist there who works closely with the cardiovascular surgeons who deal with rare cases like mine. She came in, took one look at me and said, "I believe you possibly have Loeys-Dietz Syndrome."  Read more.

"Abby's Amazing Race" in Marvell, AR, Oct 24
The Kemmer Family will be hosting the second annual "Abby's Amazing Race" 5K and fun run in Marvell, AR. If you would like to particpate or learn more, you can find them on Facebook.

Chicago "Move Your Feet for Loeys-Dietz," Oct 24
A group of families in the Chicago area have decided to take heart with a "Move Your Feet for Loeys-Dietz" event at this year's Pumpkins in the Park 5K on October 24th. You can learn more about their event and support them on their CrowdRise page. A huge thank you and good luck to all those participating!

Thanks to Regina Korochik and everyone who joined in and contributed to "Let's Dance for LDS" in Brooklyn! Contributions should be reaching nearly $3,000, all to support the LDSF! 

If you are interested in fundraising, contact us at
Still not signed up for AmazonSmile?

Signing up for AmazonSmile is easy. Simply go to and select the LDSF as the charitable organization to receive donations from eligible purchases. Amazon will remember your preference. You just need to remember to shop at (we suggest you bookmark it!). From then on, whenever you need anything from Amazon, just browse through AmazonSmile and Amazon will make a donation to the LDSF. Ta-da!


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