matters of heart







september 2017   


CARDIAC SURGERY BOOKLETS

Thank you to all of our LDSF community, both adults and kids/teens, who helped in the creation of our 'Preparing for cardiac surgery' booklets. Who better to go to for advice on what it's really like to have surgery than...those LDS'ers who've been through it! From questions to ask your surgeon, to what recovery is like, to what people wish they would have known. Check out the booklets here 

Two huge shout outs on this project: One to Courtney Whitmore who helped in the creation of this resource. (And congratulations to Courtney who has started her first year of genetic counseling graduate school at University of South Carolina Columbia. We know you are going to be a great advocate for genetics patients!)

Second to Caslin Kasten and her family that documented Caslin's cardiac surgery  journey and allowed us to use the photos for the teen booklet.  

We'd love to hear from you about ideas you have for future LDSF educational resources. Contact Gretchen MacCarrick (gretchen.maccarrick@loeysdietz.org) with your suggestions and/or if you'd like to be part of the education team.



CONFERENCE 2018: SAVE THE DATE!
CONFERENCE IS JUST A YEAR AWAY!

On July 6th - 8th, 2018, we will be hosting our fifth biennial conference in Baltimore, Maryland. Our conference planning committee is hard at work lining up speakers and new ways for us to learn and interact during our days together. Come hear from Dr. MacFarlane on her LDS research that the LDSF is helping to support through your generosity and support.

So mark your calendars and be on the lookout for further details on what promises to be another great conference!


LOEYS-DIETZ SYNDROME FOOT STUDY

Researchers at Johns Hopkins University are trying to finish up their study on foot deformities in individuals with Loeys-Dietz syndrome. This questionnaire is for both children and adults, whether you have foot problems or not. It's important to get responses from those with and without problems to understand prevalence of different features in LDS. Please take a few minutes to fill out the survey and return to Dr. Lara Atwater (latwate1@jhmi.edu).





FUNDRAISING - EVERY LITTLE BIT HELPS


    Check out our new fundraising video above and learn how every little bit helps.

You, too, can make a difference for all our Loeys-Dietz families! Fundraisers large and small all help our cause, so please celebrate life's milestones - a graduation, a birthday, an anniversary - by asking for contributions to LDSF in lieu of gifts. If you'd like help in planning a fundraising event, please contact us at info@loeysdietz.org.



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