Resounding Joy was in attendance at the 10th Biennial 11q Research and Resource Conference this past summer in San Diego. The conference included 5 days of keynote speakers and educational sessions regarding Jacobsen Syndrome. Jacobsen Syndrome is defined by the 11q Research and Resource Group as a rare chromosome disorder in which a portion of the 11th chromosome is missing. The signs and symptoms vary but individuals impacted by this disease may have speech and language problems, heart problems and specific facial characteristics.
The last day of the conference concluded with an interactive music therapy session organized by Resounding Joy’s founder, Dr. Barbara Reuer. The session was led by Lindsay Zehren, for individuals of all ages with Jacobsen Syndrome. “It was so much fun to make music with everyone and to see kids be empowered through music engagement.”
Other memorable moments of the Conference included the talent show which included amazing performances from children and adults with Jacobsen Syndrome. Another heartwarming moment was when Dr. Chris Waters gave every child at the opening dinner ceremony a “rare bear,” from her organization, Rare Science.
The conference showcased keynote speaker, Peyton Goddard, a woman who overcame the mental and physical obstacles of severe autism. Other speakers included the head chaplain of Rady Children’s Hospital, Ryan Sey. He discussed the subject of coping with rare genetic disorders. Chiropractor Dr. Tommy John III demonstrated how improving movement can help overcome physical limitations caused by Jacobsen Syndrome.
Resounding Joy was honored to be a part of the 2016 11q Research and Resource Conference. See the participants engage and enjoy the music therapy session was a moment we will cherish. If you’d like to learn more about the 11q Research and Resource Group, visit http://www.11qusa.org/.
