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As I’ve been emerging from my winter hibernation and watching the first blooms spring forth, I am amazed at the random and sometimes unexpected places where you come across the first reminders of this new season. I've continually be reminded of the saying, “Bloom where you are planted.”
Flowers can bloom and thrive in a variety of locations. Similarly, our lives are full of challenges and triumphs. In the midst of anxiety and hardship that sometimes surrounds living with LDS, there springs forth bursts of energy and love that are so powerful and motivating. Live an abundant life by putting your energy toward the things that are most important to you — maintaining relationships, nurturing yourself, balancing the demands of life and allowing time to give back! I hope that as the LDSF has positively impacted your ability to bloom, you will consider your talents and consider putting them to good work to help us grow as well, as we continue to be in need of support by both talents and finances.
You continue to inspire our Board of Directors! Recently we have set forth vigorous goals to continue the LDSF existence and success. We thank you for your support and encouragement in all the different ways it presents — sharing Facebook posts, supporting the Foundation financially, and being generous with your compassion and support for one another. Indeed, we are creating a beautiful garden!
As alway, we thank you for your continued support and dedication to the LDSF.
Until next time, Take Heart.
Gretchen Oswald - President, Board of Directors, US
IN THIS ISSUE
Board of Directors - UPDATE
in February, our US Board of Directors gathered in Baltimore for a weekend of strategic planning, work-load distribution and Board transition planning. Our volunteer leaders took time to vision-cast to ensure we continue to meet our missional goals of encouraging education, fostering research and providing support, while discussing important issues like staffing needs, funding and future leadership.
For more information on our Board meeting or to express interest in joining our board, email us at firstname.lastname@example.org. We are currently in need of someone with business and finance skills to join our group.
Board of Directors - Meet Wesley
Wesley Bange and his family live in Elm Grove, Louisiana. He has a bachelor's degree in Computer Information Systems from Louisiana Tech University and works as a Sr. Systems Analyst for a college in northwest Louisiana. Wesley and his wife, Jennie, have been married for ten years and have one daughter, Caroline. When he is not tied to a keyboard or having a princess tea party with Caroline, Wesley enjoys running and the outdoors.
Caroline was diagnosed with Loeys-Dietz syndrome in 2009 at 5 months of age. Despite the multitude of surgeries and medical procedures, Caroline remains a vibrant, outgoing little girl. It is this unwavering positivity that serves as the driving force for Wesley to support the LDSF. He hopes this support will lead to continued medical advances and education for individuals with LDS.
Wesley and his family became involved with the LDSF shortly after Caroline's diagnosis and created "Cross the Finish Line for Caroline." This annual 5K has not only served as a fundraiser for the LDSF, but has created the awareness necessary within their community to encourage education, foster research, and provide support for those impacted by Loeys-Dietz syndrome.
With funding from the LDSF, researcher Juan Calderón continues his work.
"Lab research on LDS is continuing! On one hand, studies with our LDS mouse models looking for genetic variants that may account for variability in the clinical presentation (mainly aortic disease) continues. It is now focused on some molecular analysis that may shed some light on several candidate variants we are currently investigating."
"In addition to this, we have decided to gather data on the vascular information on patients with LDS at Johns Hopkins," Juan explains. "Our hope is to distinguish subgroups of patients with regard to the aggressiveness of their aortic and other vascular presentation and perhaps relate these outcomes to the genetic variants we are investigating."
Please consider a donation to the LDSF to continue to help funding research like Juan's!
In the Literature
Researchers continue to discover more about LDS each day. Click below to read the synopsis of three recently published journal articles about LDS.
Annual Report - US
Our 2012 annual report outlines what the LDSF accomplished last year and shows some of our 2013 goals, as well as thanking all of our generous donors.
New Web site
The LDSF is pleased to announce that a new web site will soon be available! New design, new resources and new ways to connect will be coming soon. Watch your email for an announcement about the new site in coming weeks.
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.
Cross The Finish Line For Caroline
The third annual "Cross the Finish Line for Caroline" 5K and Fun Run was held in Bossier City, Louisiana, on Saturday, March 2. The event raised more than $20,000 to support the LDSF's mission to encourage education, foster research and provide support.
More than 250 participants and numerous corporate sponsors helped to make the day a huge success with give-aways, live music and prizes.
"A huge thank you to everyone who participated, donated, volunteered, or simply joined the fun," said Jennie Bange, event organizer and mother of Caroline. "When Caroline is old enough to understand, she is going to be absolutely amazed by the support within her community!"
Four-year old Caroline was diagnosed with Loeys-Dietz syndrome in 2009. Her parents, Wesley and Jennie, started the event to raise awareness and help support the LDSF. Wesley has recently joined the LDSF Board of Directors and is working to grow events like "Cross the Finish Line for Caroline" in other locations. For more information on how to start a 5k in your area, email him at email@example.com.
Many thanks and congratulations to the Bange family and their awesome community for another successful event!
On Monday, February 18, the National Honors Society (NHS) at Southeast High School hosted a bowling fundraiser for the Loeys-Dietz Syndrome Foundation. Alec Waid, Vice-President of NHS and older brother of LDS patient, Quentin Waid, led this project. When asked about the event, Alec said, "I knew I wanted to do something to give back to the Foundation because of all it has done for my brother and family. Being in a leadership position in the largest service organization in my high school, I saw the opportunity and ran with it."
At the end of the two-hour event, through the 70 bowlers in attendance and other donations, the Southeast High School NHS raised a total of $1,400 for the LDSF.
Special thanks to Alec and the officers of the NHS for their efforts and support! Great job!
On March 26, Maya Brown-Zimmerman, presented at grand rounds at the Cleveland Clinic Foundation. More than 20 medical professionals attended including pediatricians, internists, residents, social workers, and OTs.
Maya was able to present a PowerPoint presentation that covered the symptoms of Marfan syndrome and LDS, the genetics, therapy concerns (motor skills, feeding/allergies, and speech), medications, surgeries, and social support.
"Afterwards, the physician who had invited me to speak said she learned a lot, and that she hadn't even heard of Loeys-Dietz before, so she was particularly glad to learn about it," says Maya. "And other physicians, who were unable to attend due to being with patients, have expressed interest in distributing copies of the presentation to their teams."
Special thanks to Maya (and those who contributed to her presentation) for helping to raise awareness in the medical community.
Bake Sale for the LDSF-Canada
Students at Écolede musique Vincent-d'Indy (a small college in Montreal) organized a bake-sale fundraiser around Valentine's Day.
One of the students at the school has LDS, and as a result his friends helped him bake Valentine cookies, Valentine brownies and various local specialties.
Many thanks to the students who raised nearly four hundred dollars for the LDSF-Canada!
Steve Novak & Nature's Bounty Donation
The next LDSF Conference will take place June 26 to 28, 2014 in Baltimore, MD. Accomodation and registration details are in the works and more information will be available soon. We hope you'll put the dates on your calendar now and plan to join us in 2014 for this exciting weekend.
Pins For Peyton
& Gracie Too
Save The Date - Bowling Event
Find out more at www.PinsForPeyton.com
Interested in finding out more about hosting your own fundraiser for the LDSF? Email us at firstname.lastname@example.org for more information.
Heart Pins & Cards
LDSF Heart Pins and Greeting Cards are now available for ordering. Support the LDSF with these fundraising items and help spread awareness too.
Consider a heart pin or pack of cards for your holiday giving! They make great and unique gifts for the upcoming season.download the order form
Loeys-Dietz Syndrome Foundation
US - P.O. Box 22468, Baltimore, MD 21203
Copyright © 2013