A project of JOUBERT SYNDROME & RELATED DISORDERS FOUNDATION
The 2013 Joubert Syndrome and Related Disorders conference will be held in MN. Please help ensure all families have an opportunity to attend
What is Joubert Syndrome?: Joubert syndrome is a rare genetic disorder affecting the cerebellar region of the brain which controls balance and coordination.
Individuals with Joubert Syndrome and Related Disorders often suffer severe neurological problems resulting in issues with balance and coordination, mobility, speech and feeding issues. They are often visually impaired and are at heightened risk of developing serious kidney and liver disease sometimes requiring organ transplants.
About the 2013 Conference: The Joubert Syndrome and Related Disorders Foundation (JSRDF) hosts a Biennial Conference where families from around the world will gather to share medical updates and personal experiences, many of whom have never met another individual with Joubert Syndrome.
This Conference is one of the few opportunities families have to speak first hand to medical professionals knowledgeable about Joubert Syndrome and to learn from other families’ successful strategies to manage the emotional and physical care of their children. These are two very critical reasons as to why many families hope to attend.
How You Can Help: This Conference not only brings families help, it brings them hope. As you might imagine, putting on a Conference of this caliber is expensive resulting in high registration fees. In addition, families incur travel-related expenses as they come from around the world to attend. To support the efforts of the Foundation in hosting the Conference, underwriters are needed to help cover some of the conference expenses. In addition to being recognized at the closing banquet, donor corporation logos will be prominently displayed in registration forms.
CHECKS CAN BE MAILED TO: JSRDF c/o Jon Morgan, 414 Hungerford Drive, Suite 252, Rockville, MD 20850
please write CONFERENCE DONATION in the memo field