We are a "Little" group of families reaching out for one another’s support on dealing with this medical rarity and how it affects all of our lives. Family Newsletters are written to share our experiences, knowledge and information. Also to provide resources and support and to relay upcoming events and research. We hope you enjoy the newsletters. We welcome new articles by individuals and families who would like to share a moment in their lives with our Foundation family. If you would like to remit an article to the newsletter, please send to one of the e-mail addresses below. We will review your story and contact you if we will be placing it in an upcoming newsletter. You may remit any concerns or errors to our attention by sending us an e-mail to either of the addresses shown here: Newsletters are available in PDF format, which will allow you to download the file, and either read it on your computer or print it out. You will need a PDF reader (or PDF reader browser plug-in) to open the file. Adobe Acrobat Reader is the most common PDF reader, and it can be downloaded free of charge at the Adobe Web site.
Karla Kruger, Founder/President: robinowfoundation@comcast.net or
Kim Ortiz-Kremeier, Resource Manager: robinoworg2@centurytel.net