matters of heart







may 2016   


DR. DIETZ'S INSPIRATION

Dr. Dietz will be attending and speaking at the 2016 LDSF conference. In the video above, Dr. Dietz explains what inspires him to continue his research into Loeys-Dietz syndrome.
CONFERENCE 2016: REGISTER NOW BEFORE IT'S TOO LATE!



The 2016 LDSF Conference is just a little over a month away!
Online registration will be closing June 1st for our biennial conference. If you would like to attend, the time to register is NOW. We hope to see you in Baltimore!
WHY ATTEND THE 2016 CONFERENCE?
Kristy Moser shares her story

For us, the LDS conference is a home coming. We belong. We are family. We know that no matter what we are welcomed. This conference in June will be our third. Our first conference was in 2012 when my son, Wyatt, was 11 months old. That conference was the first time I saw someone who looked like my son, it was the first time I could talk to a mom, face to face, who knew what I was going through. This was the best part of the conference. For us, we had felt so alone. We live in a suburb of Cincinnati and knew no one else in our area with LDS. We had connected with people over Facebook (thank God for Facebook!) but had never come face to face with people who was dealing with the same things that we were dealing with. It was emotional, it was real, and it was great! Read More.


OPPORTUNITY TO TAKE HEART AT CONFERENCE

Once again at the 2016 LDSF Conference, there will be the opportunity to participate in a facial recognition study through the  University of Colorado School of Medicine. They will be consenting patients for 3D photographs through their research protocol. The  study is a NIH-funded project to build a database of 3D images of people with genetic syndromes, analyze facial structures of specific syndromes, and ultimately come up with a clinical tool for differential diagnosis.  The investigators will be using a new 3D camera which is faster and takes higher quality photographs so they are interested in collecting both new participants and participants from 2014 conference. 

The investigators are interested in the specific gene and mutation for Loeys-Dietz syndrome in participants, so if you are potentially interested in this project, please bring this information with you to conference!

WITH THANKS

We are deeply grateful to the family of Cathleen "Casey" Nilles for designating the LDSF to receive gifts in memory of their daughter who passed away earlier this year and to the friends of Andrew Hoien who raised funds in his memory via CrowdRise.


HELP US EVERYDAY    

With AmazonSmile, Amazon essentially donates a small portion of sales to the charity of your choice. You sign up once, designate the LDSF as your charity, then remember to shop through smile.Amazon and bingo. Same Amazon store, same Amazon prices, only difference is the donation you're generating. 

To sign up, go to smile.amazon.com and select the LDSF as the charitable organization to receive donations from eligible purchases.



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