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Matters Of Heart - Spring 2013


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


Gretchen Oswald - President, Board of Directors, US



The Bange FamilyCross the Finish Line 5k Start






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 wesley.bange@loeysdietz.org.


Many thanks and congratulations to the Bange family and their awesome community for another successful event!

NHS Officers

Florida Bowling

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!

Ohio Presentation

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.

CookiesCanada Bake Sale






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!

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Steve Novak & Nature's Bounty Donation

A special THANK YOU to our friend Steve Novak, forward for the New York Knicks, for continuing to support the LDSF. Last winter, Steve made an appearance for Nature's Bounty, who donated $20,000 to Steve's charity of choice - the LDSF.


Thanks to both Steve and Nature's Bounty for their support and helping us encourage education, foster research and provide support for our community!

Book ReadingBook Signing




"Mo: A Loeys-Dietz syndrome Memoir" - Raising Awareness


Author and LDSF Board Member, Kate Jurgens continues to raise awareness about LDS through her published memoir.


Kate's book has become required reading for several senior and graduate level courses at her alma matter, Marquette University. In January, Kate presented to 50 undergraduate nursing students at MU about LDS and the importance of family-centered care. In February, she met with 14 Nurse Practitioner students who read the book in a book club format. "During our discussion I realized I had connected with and made an impact on a small piece of the human experience," says Kate. " I was truly touching those who would carry forward principles of Family Centered care - something very close to my nursing heart, something I feel very strong about, something I had a brief intention of when thinking about what 'Mo' could do for others."


Kate also shared excerpts from her book during her first book reading on January 22 at Boswell Book Co. in Milwaukee, WI. Over 125 people gathered on a cold night to hear Kate read and discuss her story and raise awareness about LDS. A second book reading took place on February 9 at Catholic Books and Gifts in West Allias, WI. Kate has one more book reading scheduled in April and is looking forward to more opportunities to raise awareness about LDS through her writing and public readings.


The NBC affiliate in Milwaukee invited Kate to join a segment on their "Morning Blend" program and share more about "Mo" and LDS. At the end of January, Kate was able to spend a few minutes on-air raising awareness.


Currenlty, the book is available in both paperback and Kindle versions through Amazon.com and BarnesAndNoble.com. Please visit Kate's blog (katehjurgens.blogspot.com) for information, pictures, announcements and all things "Mo."


Many thanks and congratulations to Kate in her tremendous efforts to raise awarness on behalf of the LDSF in her community and beyond.

PresentationMini Conference at Hôtel Dieu Hospital - Montreal

On January 24th, LDSF-Canada president Joseph Galli, co-founders Johane Gauthier Galli and Francoyse Leroy Fratino, and member Alex Galli were invited to give a lunchtime conference to the genetics department of Hôtel Dieu. The hospital is Montreal's oldest. Nearly 20 doctors attended the presentations and learned about LDS.


Many thanks to the presenters for helping to raise awareness about LDS in the medical community.

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Volunteers Needed

The LDSF continues to have need for volunteers. Any amount of time and skillset can make a difference in keeping this volunteer-run organization moving forward. Currently we are looking for the following volunteers:


  • State Fundraising Application Volunteer: Because we are a national organization and participate in online-fundraising, we are looking for a volunteer to help create a spreadsheet of state requirements and help with filing to ensure the LDSF meets all state requirements for fundraising. This volunteer needs to be organized and willing to wade through various state listings and resource books.

  • Grant Searchers: We know that we cannot move forward substantially without applying for and receiving grant support. We are looking for volunteers to help search the Internet for possible funding/grant opportunities that may align with our mission and vision. The LDSF will work on the actual application, we are looking for volunteers awilling to give a few hours a month to perform internet searches and identify possible sources of funding.

  • Board of Directors: The Board has the responsibility of guiding, supporting and directing the mission of the LDSF, ensuring that our organization is moving closer to our stated goals, setting direction for future projects and overseeing the finances of our non-profit. Board Members will serve two-year terms, be required to participate in quarterly teleconference meetings and one in-person meeting per year, and to serve on various subcommittees as assigned and appropriate. Board members do not have to have or be related to someone with LDS, but must have a passion for helping encourage education, foster research and provide support for those impacted by LDS. Currently our Board of Directors is in need of individuals with skill sets and passions in the following disciplines: Finance, Business, Fundraising/Grant Writing, Law, Medicine and Nonprofit.


For more information about any of the opportunities or to volunteer your time and skills, please email us at volunteer@loeysdietz.org and let us know what you're interested in helping out with.

Forwarding This Email to Friends

We would love for you to forward this email to anyone you think might be interested in the happenings of the LDSF, but please only do so using the "Forward this email" link in blue at the bottom of this email. Per the Constant Contact system, if you simply select forward from your email program and the person you send it to tries to unsubscribe, it is you who will be unsubscribed. If you have a friend who might be interested in keeping up with the LDSF, you could also encourage them to fill out our database form (see below or click here to fill out the form). Thanks for sharing the work of the LDSF!

LDSF Database - Sign Up Now!

The LDSF is working on cleaning up our mailing lists and database. Our database will be used to help us collect rough information regarding geographic regions of those impacted by LDS. We are encouraging all of our familes to register their children and other impacted family members to help us gather a more accurate regional picture of LDS.


To be included in our database, which allows us to contact you with future developments and updates, primarily by email, please complete our new membership form.

sign up for the LDSF database here


Baltimore, MD


Conference 2014


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

Pins For Peyton

& Gracie Too

Save The Date - Bowling Event


Portage, IN
May 18, 2013

Find out more at www.PinsForPeyton.com

Interested in finding out more about hosting your own fundraiser for the LDSF? Email us at volunteer@loeysdietz.org for more information.

Heart Pins & Cards

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


  • Matters Of Heart: To provide an outlet for members of the LDSF community to connect and stay informed with accurate, relevant and timely information.
  • LDSF: The Loeys-Dietz Syndrome Foundation (LDSF) is a 501(c)(3) non-profit organization based in Baltimore, MD. The LDSF-Canada is a Canadian Registered organization based in Montreal, Canada. Both organizations are dedicated to: encouraging education about LDS and related connective tissue disorders, fostering research and providing support for patients, parents and families affected by LDS.

arrow check our website for additional information


Copyright © 2013