Don’t hesitate to reach out with the contact information below, or send a message using the form.
Contacts
This page was co-written by Ronna and Cécilie and is also the web page for the Kniest SED Group.
- For general questions about SED or SMD or Kniest, please email support@ksginfo.org.
- To contact an adult with Kniest, please email Marylou: high10yourlife@sbcglobal.net or visit her website http://www.high10yourlife.com.
- To contact a parent of a child with Kniest Syndrome and Pierre Robin Sequence, email Deslie: deslielynn@hotmail.com.
- To contact the parent of a child with SMD-Kozlowski, email Laura: lahemly@cox.net.
- To contact the parent of a child with SEDC, email Laurie: ldbailyn@hotmail.com.
- To contact someone with SEDC who has had a hip replacement, please email Laura: lzirpolo@earthlink.net.
- For help with car modifications contact Casey, a dwarf and Driver’s Ed instructor: chayim76@yahoo.com.
KSG Information and Support Website 