11q Research and Resource Group 2020 Family Conference Postponed to 2021


11q Research and Resource Group 2020 Family Conference Postponed to 2021

As many of you know, we have been closely following the COVID-19 pandemic as it relates to our 11q family conference scheduled for July 6-9, 2020 in Washington D.C. We have been consulting with the hotel as well as Dr. Grossfeld concerning the health and safety of everyone, but especially for individuals with 11q disorders. Although we have been hoping that things would improve by July and we would be able to go forward with the conference, we don’t feel like conditions will have improved enough by then to safely ask families to travel or to meet together as a large group, especially since many of the individuals with 11q disorders have immune disorders. In the best interest of all who plan to participate in the conference, we have decided to postpone the conference until next summer. The new dates will be July 5-8, 2021 at the same location, Doubletree, Crystal City. We are saddened that we won’t get to meet together this summer as planned, but we are excited to continue planning for next summer and hope that many of you will be able to join us.

If you have already registered and paid for the conference, we will refund your money through paypal. If you have booked a room, you will need to call the hotel and cancel your individual reservation as they are not authorized to cancel reservations in our block because they are made by individuals. The number to the hotel is (703) 416-4100 in case you need to call and cancel. Please use the get in touch button below for any additional questions.


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.

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