matters of heart

april 2015   


Flip through the pages of the LDSF 2014 Annual Report to see what we accomplished, what we are striving towards in 2015, our financials, and the many donors who have made our work possible.


Some highlights from 2014:

  • Convened the 2014 Conference with 204 participants from 7 countries and 12 medical experts
  • Helped recruit participants for studies on facial recognition, foot, ocular and pregnancy information
  • Increased fundraising by nearly 10 percent compared to the annual average of 2011-2013
  • Expanded our Board of Directors from six to nine members

See the 2014 Annual Report for much more!



Last month we launched a  Survey on Loeys-Dietz syndrome to help us get a better sense of the number of people with Loeys-Dietz and their ages. Thanks for all the responses so far! 


If you haven't yet participated, here's why you should. Knowing who we are as a patient population can:

  1. help the LDSF better tailor its educational resources and outreach,
  2. arm researchers with valuable population estimates, and
  3. provide a sense of longevity beyond the 26 years mentioned in the first article describing Loeys-Dietz, which counted on a very small sample of patients.

All that for just three minutes of your time. Click here to get started.



As we were leaving Children's Hospital Los Angeles after learning Nicole was to have emergency surgery the next day to replace her two broken spinal rods, Nicole looked somber and pensive. She said to me "Mom, I am so sorry that you have to go through this once again. I can't believe another holiday will be spent in the hospital and we have to cancel another family vacation. I feel like I ruin everything." As I blinked back tears, I first thought, "Wow she is growing up and thinking about how her challenges are impacting others"; then I felt so sad that she will never have the carefree healthy childhood you wish for your child. My response to Nicole's comment was that the joy she gives our family with her fun, sparkly personality far outweighs her medical challenges. READ MORE 



Julie and Chris Wilson's "Move your Feet for Loeys-Dietz"

In honor of their son Conner, Julie and Chris are part of a relay team in the Pittsburg Marathon, raising awareness and support for the LDSF. Support their cause by heading over to their crowdrise page. All proceeds benefit the LDSF.



Alexa Rodriguez's "Move your Feet for Loeys-Dietz"

In honor of her sister, Sophia Maggio, who was recently diagnosed with Loeys-Dietz, Alexa hopes to raise awareness and funds to support research. You can help support her cause by heading over to her crowdrise page. All proceeds benefit the LDSF.




June 20

skeet shooting in Hudson, Wisconsin


To the hundreds of donors listed in our 2014 Annual Report, to the many others who give anonymously, thank you for your generosity. Your contributions helped us deliver what we did in 2014 and inspires us as we plan ahead.


If you are interested in fundraising, contact us at

Welzoo, AmazonSmile, iGive & Bravelets

Surfing the internet? Ordering off Amazon? Looking for some unique jewelry? Did you know you can help generate funds for the LDSF with things you already do? Take a moment to see how you can help us raise funds everyday. Learn how to help the LDSF.


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