matters of heart







july 2016   

CONFERENCE 2016: THANK YOU!

We would like to sincerely thank all those who attended, presented, and organized the 2016 LDSF Conference. It was an incredible success. Over 200 people from 79 different cities, 26 states and 7 different countries came together in Baltimore to learn more about LDS and to build relationships with others in our community. We hope everyone left with new knowledge, friendships, and lasting memories.  In the coming weeks, we will be posting videos of the presentations from the general session, so stay tuned for those. Until then, enjoy this video recap:


If you missed 2016, we hope to see you at Conference 2018!

FOSTERING RESEARCH: A NEW COMMITMENT
A Message from LDSF President Wesley Bange

Dear Friends,
 
As I begin my tenure as the President of this foundation, I am humbled, if not shocked, to have been asked to serve in this role. It is not a position I would have ever envisioned myself being in. Many things have happened in the last 8 years since my daughter Caroline was born and then diagnosed with Loeys-Dietz syndrome (LDS) that I did not envision happening.
 
Over the course of those 8 years I have had a great deal of time to think about what a Loeys-Dietz syndrome diagnosis means. Be that a diagnosis for...READ MORE
RESEARCH STUDY OPPORTUNITIES

We continue to have the following research study opportunities available. Please consider participation; every answer helps to advance our knowledge about Loeys-Dietz syndrome. You can also check out more detailed information about the study at the link below.

As always, even if you do NOT have any medical concerns surrounding the following questions, it is important to obtain information from those without problems as well to learn about prevalence of certain features in LDS!
  • Pregnancy study
  • Foot study
  • Spondylolysis and Spondylolisthesis (lumbar spine disease)


WITH THANKS

The 2nd annual Clays with Caslin event was held last month in Eau Clair, Wisconsin. This fun day of skeet shooting raised significant funds for the LDSF.


Regina Korochik held her 3rd annual Luna Park/Coney Island fundraiser for LDSF in honor of her son Matt (pictured). Through ticket sales to this amusement part, she raised more than $1,000!


Kate and Mo Jurgens celebrated their respective 50th and 21st birthdays with a fundraiser for LDSF. We thank their family and friends for supporting our cause!

We are deeply grateful to the family of Gabriela "Gabi" Guaipatin for designating the LDSF to receive gifts in her memory.


OPPORTUNITIES TO TAKE HEART   

Wesley Bange is celebrating his 35th Birthday this month via a fundraiser on CrowdRise in honor of his daughter Caroline. Click here to wish him a happy birthday and support the LDSF!

We have recently formed a Fundraising Committee and there are plans underway to give all families easy options to join in raising funds. Stay tuned for more information next month! 



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