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Welcome to the new, online version of Matters of Heart - our regular newsletter publication. You'll still find all of our wonderful information, just in a different format. We hope you'll enjoy.
We hope you're planning to join us this summer in Baltimore for our 2012 Conference and a time to make new connections, learn more about Loeys-Dietz syndrome and share your stories. While we will have wonderful opportunities for our kids to connect and parents to learn and find support, it is also our priority to discuss and address the needs of our growing adult population. The fact that we have this need to develop resources for adults is a source of hope and inspiration. When individuals were first diagnosed years ago, our outlook was somewhat bleak, but now, with early diagnosis and proper surveillance and management, we have many individuals in their 40s, 50s and beyond. The LDSF is dedicated to understanding what issues are involved with “growing older with LDS” and we look forward to great discussion on this topic during our summer Conference.
As more and more families are being diagnosed with LDS, they are finding increased community and support on our Forum, Facebook page, Twitter and individual connections. Thank you to everyone who posts and shares stories and experiences. Every week, we receive an email from a new family who has found hope in those who have gone before them in the journey of a new, rare diagnosis.
We thank you for your continued support and dedication to the LDSF. Until next time, Take Heart.
|Gretchen Oswald - President, Board of Directors, US|
Cross the Finish Line for Caroline
The 2nd annual 5k event took place on March 3 in Bossier City, LA. Caroline, who was diagnosed with LDS in 2009, was the star of the event created by her parents Wesley and Jennie Bange to raise awareness and funds for the LDSF. With over 300 participants, numerous corporate sponsors, free give-aways, great music, food and fun for the whole family, the event was a huge success and raised more than $19,000 for the LDSF.
Paul's Cycle & Sports
On December 10, 2011, Paul's Cycle and Sports held a fundraiser and collected $1450 for the LDSF Canada. More than 30 riders raced against each other to raise funds. Joseph Galli, director of the LDSF Canada, pedalled for the cause, while his wife and three sons volunteered. A special thanks to Paul's Cycle and Raymond and Pierre-Paul Schiltz, owners.
Dominic Girard Fundraiser
Dominic Girard, an LDS patient and teacher in Chicoutimi, Quebec (500km North East of Montreal) held a fund raising event that generated $5,400 for the LDSF Canada. Dominic's students were so inspired by his courageous battle with LDS that they decided to hold an event in his honor. Students obtained media spots that were donated by local media outlets and then resold these media spots to local businesses. The event was covered by local media and Dominic was featured in an article.
Ben & Jerry's Winter Festival
Marla Hogan organized the 2nd fundraiser for the LDSF at the 10th annual Ben & Jerry's Winter Festival at the Factory in Waterbury, VT in memory of her husband, Rob. They created signage to show off the calligrapher and to explain LDS, along with pictures of Rob, who passed away in 2008. "A physician came by and told us that she had not heard of LDS before and was looking forward to doing research to learn more," said Marla. "It is always a great feeling knowing we're educating people and raising awareness." The event raised $650 dollars and will be mached by Marla's company.
lilDragon Video Award
Congratulations and thanks to Gabe McCauley and crew at lilDragon in Nashville. Gabe and his team won a contest for their "Co-Working = High Fives" video and in turn $1,000 was donated to the LDSF for their success by the contest hosts.
Gold's Gym March Music Madness
Congratulations and thanks to Steve Novak of the New York Knicks for picking a rocking song and winning the 2nd annual March Music Madness competition sponsored by Gold's Gym and Men's Health magazine. Gold's Gym will donate $5,000 to Steve's charity of choice, the LDSF. Thanks Steve for your support - and musical taste!
The LDSF is greatful to all of it's donors who make our mission to encourage education, foster research and provide support possible. Please consider partnering with us to make a difference in the lives of those impacted by LDS.
IN THIS ISSUE
June 29 to July 1, Baltimore, MD
Our conference schedule is out and registration is open until May 31. Sign up today to spend a weekend with the top LDS medical professionals in the world and other individuals and families navigating the journey of LDS.
Corporate Conference Sponsorships
Corporate sponsorships at various levels are still available for our upcoming conference. For a copy of our sponsorship package or for more information, email email@example.com.
Conference Silent Auction
Heart Renderings - Michelle Swindle
Michelle and her two-and-a-half year old son, Bodhi, both have LDS. Here is part of her story.
Ask my mom and she'll tell you straight up what she thinks about me... I am the most strong-willed, stubborn, determined person she knows, and when I have my heart set on something, I do it. So when I was diagnosed with Marfan syndrome by physical exam as a teenager, I never let it stop me from doing whatever I wanted. I had regular echos and continued to see my GP and that was it. I didn't do any research; I didn't tell anyone I had it; I didn't try to understand how it could possibly affect me and the lifestyle I wanted for myself.
I focused on my career as a zookeeper, even though I knew how much physical labor the job required and the amount of stress it puts on one's body. As far as having kids, I always knew I was going to have them, but I wanted to succeed in my career first, and so I did. That is, until late 2007, when it was discovered I had a massive blood clot in my brain. That incident and my recovery from it changed the course of my life, and I put my dream career behind me (or at least on hold for the time being).
My husband, Ryan, and I started talking about the possibility of children. At 29, I felt this sudden internal desire so strong I could not ignore it. "I have to get pregnant! I have to have a baby now!!," my insides screamed loud and clear. I got the go ahead from my cardiologist, who said it would "technically" be a high-risk pregnancy but that he didn't see any reason why I shouldn't get pregnant.
To the relief of my screaming insides, we were pregnant almost instantly. I could not wait until I had morning sickness... that seemed to be the comforting proof I needed to believe that this was actually happening... I'm having a baby!
2011 LDSF Annual Report
Our 2011 annual report outlines what the LDSF accomplished last year and shows some of our 2012 goals, as well as thanking all of our generous donors.
Newly Published - March 27, 2012
An article was published in the Genetics Home Reference about LDS and the genes that cause it.
In the Literature
Much attention is paid to the aortic root in Loeys-Dietz syndrome, as this is the most common site of aneurysms detected in individuals. As individuals age, aneurysms can also be detected in other portions of the aorta as well as throughout the arterial tree, highlighting the importance of routine surveillance of the vasculature through MRAs and CTAs.
In this newsletter we focus on three papers published in the medical literature recently on repair of aneurysms throughout the body. The important take-home messages are:
- Surgical intervention of different types are well-tolerated in individuals with LDS, although longer term follow-up and study is needed.
For any of you who may recognize yourself in these case reports, we thank you for participating in the publication of your surgeries as it helps to educate other medical professionals about management in LDS.
Multidisciplinary Clinics - Canada
Pins For Peyton & Gracie Too
May 19 - Portage, Ind.
Fourth Annual Bowling event - $30 for Bowling, $15 for Non-bowlers. Price includes Bowling, Shoe Rental, Food, Raffle prizes and more!
To The Links For The LDSF
July 20 - Grafton, WI
First Annual Golf event - $160 to golf and dine, $50 for dinner guests. Win a chance to play with Steve Novak, forward for the New York Knicks.
Heart Pins & Cards
New LDSF Heart Pins and Greeting Cards are now available for ordering. Support the LDSF with these fundraising items and help spread awareness too.download the order form
Loeys-Dietz Syndrome Foundation
US - P.O. Box 22468, Baltimore, MD 21203
Copyright © 2012