11q RESEARCH & RESOURCE GROUP WELCOMES YOU
WHO WE ARE
The mission of this website is to provide support and organizational efforts for the parents, as well as friends and family, of all children with 11th chromosome abnormalities, including deletions (monosomy), duplications (trisomy) and translocations.
Through networking, cooperation with the research community, and the resulting sharing of information, our nonforprofit will be better able to meet the challenges brought to us as parents, families and friends of 11q children.
What is Jacobsen Syndrome?
Jacobsen's Syndrome (11q Deletion or 11q-) is a rare chrome disorder in which a portion of the 11th chromosome is missing. It affects about one in every 100,000 births. People who have this disorder may have heart problems, speech and language problems, specific facial characteristics, and mild to severe mental retardation, although many children with Jacobsen's are extremely capable.
Jacobsen Syndrome is caused by the loss of a small portion of a chromosome at conception. A chromosome is made up of DNA code in a thread-like structure present in the nucleus of most cells in the body. The DNA code in turn carry genes which are the all important instructions about how each cell in the body should divide, grow and die. In each cell, there are 23 pairs of chromosomes. The body needs all 23 pairs for normal health and development. In Jacobsen Syndrome a small piece of the 11th chromosome is missing (or deleted) and this causes a range of clinical features in individuals with this condition. The features are related to the genes that are absent from the small piece of chromosome 11 that is missing. The reason for the loss of the piece of chromosome is not fully understood. Jacobsen syndrome tends to occur more frequently in females than in males.
2022 Conference Registration
- Mark your calendars!
- Cost is per child. Childcare is available during all conference speaker sessions and during the adult reception. Individuals with special needs and their siblings are welcome. There is no age limit for individuals with 11q.
- The sibling workshop is intended for children 7 and older. Please register for each individual child.
11q Run, Walk and Roll
All proceeds support The 11q Research & Resource Group
and Dr. Grossfeld's life saving research.
This is a virtual event (participate from your own location) with three different options:
5k, 11k for 11q, or a 50 Mile Challenge
Participants can have a team or register as individuals, but all involved parties must sign up before September 1st, 2022.
$10 for children
$25 for adults age 16+
Plus applicable fees.