matters of heart







november 2017   


 


#GivingTuesday is a global day of giving fueled by the power of social media and collaboration.

Celebrated on the Tuesday following Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday, #GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving.

Thanks to your generosity, the LDSF has given $100,000 in research funds this year to Dr. Elena MacFarlane at Johns Hopkins. Join us this #GivingTuesday as we continue our goal of moving forward the science of Loeys-Dietz syndrome




Conference 2018 - Save the Date - July 6th - 8th 2018 in Baltimore, MD 

 
Why attend conference? To hear from the Loeys Dietz Syndrome experts in the fields of cardiology, vascular surgery, orthopedics, genetic disease associated with food allergies, gastroenterology, endocrinology, craniofacial and dentistry, maternal-fetal medicine and genetics, pain and fatigue management, emergency room care, nutrition, stress management and rehabilitation therapies.
 
Meet The Sterling Family  
 
My amazing wife Courtney, myself, and our two young sons- Perry age 4.5 and Preston age 2.5 are new to the LDS family.  Our two little champs and myself were diagnosed with Type 4, and the constant and consistent rounds of visits to doctors has honestly been difficult mentally and physically for the Sterling crew.  But with the support and friendship of Gretchen, Dr. Dietz. and the extended Hopkins and NIH families, we feel empowered with knowledge and bolstered by recent LDS findings that allow our kids to be kids, and dad to be dad.  The saga began in 2008 with dad's aortic valve replacement and insertion of St. Jude's mechanical valve, with question marks behind the diagnosis and need for surgery, until 2016, when tests on Perry and Preston finally shed light.  Our little fighters consider doctor visits playtime and look forward to the trinkets of entertainment in the waiting rooms!  The 2016 conference was equal parts peace of mind, group therapy, and venting! I was the first to sprint to the front the room to ask the presenters questions specific to my family's situation, and was always greeted with patient ears and eyes. Since then, we've gotten to know other members of the LDS family well and can personally attest to the sheer power of support and kind words.  


To tell the truth, I never really believed in the concept of silver lining, but I like to tell others that we're powering through and when you have those that care about you clearing the path, you can jointly blaze a trail!


Andrew, Courtney, Perry and Preston Sterling


  
 

Organizational changes to the LDSF in 2018!

 
We have been run by a volunteer Board of Directors over these past years, who through their dedication and passion have continued to embrace the Foundation mission and move us forward. We are indebted to all of our generous supporters who have also given of their time, resources and energy to make the LDSF the community it is today. We are proud of all that we have accomplished. This past year, we have reflected on how to continue to provide excellent information, community and be conduits to research in the face of ever-increasing complexity and challenges of running a nonprofit.
 
As such, our BOD wanted to update our community on some infrastructure changes that will be occurring in 2018. The LDSF has existed under its own 501c3 status; a nonprofit organization that has been recognized by the IRS as being tax-exempt by virtue of its charitable programs. Most nonprofits choose this model to be able to accept donations.  Because of increasing challenges surrounding management and administrative tasks to our volunteer BOD, we have elected to utilize a fiscal sponsorship model for operations. Read more here

 


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