matters of heart







september 2014    

DEAR FRIENDS,

This is my last commentary as LDSF President and I want to thank you for your support over the last 4 years. As a nerdy academic, I've learned and grown in leading the Foundation. Most importantly, my role has given me the opportunity to learn your stories and be part of your lives. Throughout, your support and encouragement have been immeasurable and I thank you.

 

It has truly been an honor and pleasure to work alongside such a dedicated, compassionate and hard-working Board of Directors. Our Board, and other volunteers who continuously rise to the occasion in fundraising and support, are the heroes of the LDSF. Thank you for allowing me the opportunity to lead and work alongside you.

 

As I stated in my LDSF Conference address, I'm inspired by how far we have come as a community. At Conference this year, I was amazed to see all the new faces and old friends. This growth speaks volumes to the awareness that has been raised in the medical community about Loeys-Dietz syndrome and the number of appropriate diagnosis we see today. It is also a testament to the spirit of community that our members bring, in welcoming and embracing those just beginning this LDS journey and in working together to continue to propel our knowledge of LDS further. And today, this knowledge and community extend beyond one country's borders!

 

As you read about our 2014 Conference, incredible fundraising endeavors, and ongoing research, I hope you are inspired to think about your own contribution to the LDS community and the Foundation's future success. We need your hearts and voices!

 

One last time, thank you for "taking heart." I'm looking forward to even greater accomplishments for the LDSF ahead!

 

Gretchen MacCarrick

LDSF President, 2010-2014


CONFERENCE 2014

 

The LDSF 2014 Conference (June 27-29 in Baltimore, MD) was everything it was meant to be--a time for learning about the latest research on LDS, connecting with other families and patients, and thinking about the potential of what we can do together as a Foundation to improve the lives of those living with LDS. The plenary sessions were recorded and will be available soon. Stay tuned to your inboxes!

 


MEDICAL UPDATES

 

A MAC member at the NIH!

Congratulations to Dr. Pamela Frischmeyer-Guerrerio, one of our Medical Advisory Council members who specializes in allergy and immune conditions. Dr. Frischmeyer-Guerrerio is moving her research practice from Johns Hopkins to the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institute of Health (NIH), where she will continue her research with LDS and related conditions. More information will follow regarding how you can participate in her clinical and other research studies.

 

Help us learn more about pregnancy in LDS

Are you a woman with LDS who has been pregnant or given birth? Did you have a female family member with LDS who passed away and had children? Whether successful or complicated pregnancies, a research team at Johns Hopkins University would like to hear from you. Your experience and that of loved ones will help inform guidance for women with LDS who may want to have children. Participation involves filling out a one-time questionnaire. Click here to help us learn more.


OPPORTUNITIES TO TAKE HEART

 

 

 

 

Move your feet for Loeys-Dietz 

Are you a runner, triathlete, occasional 5K participate? Do you want to be? We have started a newfundraising idea with you in mind called Move Your Feet for Loeys-Dietz. This campaign makes useof the online site CrowdRise. It's a fun and easy way to help raise funds to support the LDSF. Click here to learn more

 

 

 

 

 

 

Coming up...

 

October - Online  

The Foundation will be hosting its first ever, online Halloween costume contest. Send pictures of your LDS ghoul or goblin to info@loeysdietz.org anytime in October. We are going to be posting them to our Facebook page. The winner will receive a haunting prize from the LDSF!

 

 

October 9 - Randolph, NJ 

Kelly Toohey is hosting a fundraiser at The Black River Barn. 15% of all food and drink purchases will be donated to the LDSF. Gretchen MacCarrick, co-founder of the LDSF and sitting board member, will be there! If you are in the area, and looking to support a great cause, we'd love to see you!

 

 

 

  

October 18 - Marvell, AR 

The Kemmer Family is hosting Abby's Amazing Race, a 5K and Fun Run in honor of their daughter Abby. 100% of the proceeds are being donated to support the LDSF. If you are interested in participating, you can register online.



November 1 - Panama City Beach, FL
Tomas Orihuela will be participating in Ironman Florida 

supporting the LDSF via the Move Your Feet for Loeys-Dietz campaign. Good Luck Tomas!

 

 



WITH THANKS
A special thanks to Regina Korochik and all that helped support her Coney Island fundraiser. She raised, in honor of her son Matthew, an incredible total of $4,500! That money will be used to further the LDSF mission of education, research, and support. Thank you Regina, and all her supporters, for Taking Heart! We couldn't do it without you!

HELP US EVERYDAY
Welzoo, AmazonSmile & 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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