Resources
LDSF Board Members: For more information about family contacts and/or volunteer opportunities within the LDSF, please feel free to contact our Board members.
• Kendall Bilbow (Texas)
• Raquel Gomes (Maryland)
• Barbara Hawthorne (New Jersey)
• Stephen Hawthorne (New Jersey)
• Kate Jurgens: Kate.Jurgens@loeysdietz.org
Kate is the mother of four children in Wisconsin. Her 12 year-old daughter has Loeys-Dietz syndrome.
• Sarah Moore: Sarah.Moore@loeysdietz.org
Sarah is from Baltimore, MD where she is currently a student and raising one child. Sarah has Loeys-Dietz syndrome.
• Gretchen Oswald: Gretchen.Oswald@loeysdietz.org
Gretchen is a Genetic Counselor at the Johns Hopkins University in Baltimore, MD and works primarily with individuals diagnosed with LDS and other connective tissue disorders. Gretchen is a co-founder of LDSF.
• Robin Pelton (Texas)
• Beth Utz: Beth.Utz@loeysdietz.org
Beth is the mother of 6 children, whose second child, Alex, has been diagnosed with LDS. The Utz family resides in Ohio, and Beth is founder of LDSF.
• Derik Utz (Ohio)
• Sheila Waid: Sheila.Waid@loeysdietz.org
Sheila and her four boys live in Bradenton, FL. Her third son, Quentin, has Loeys-Dietz syndrome. Please visit his website: Quentin's Quest
LDSF Message Board: An online forum available for individuals, families and/or friends of those with LDS can be found at LDSF Forum. We have been experiencing some technical difficulties with the forum, so please be patient and check back for more updates if the link does not work!
Foundation Information: The Loeys-Dietz Syndrome Foundation is registered as a non-profit corporation under the State of Ohio and is exempt from the United States Federal Income Taxes under section 501(c)(3) of the Internal Revenue System. EIN#65-1306978