DESSH Global Conference
Spende geschützt
We hope to have the first ever International Conference for DeSanto-Shinawi Syndrome (DESSH), a very rare genetic syndrome that impacts our son and less than 70 other children around the world!
After our recent trip to St. Louis, USA to meet the doctor who first discovered this syndrome, Dr. Marwan Shinawi, we are focused on raising $8,000 to host the first ever international meeting for those diagnosed with this syndrome. We are hoping to hold a 1-2 day conference in the U.S. this summer 2019. The goal of the conference is to bring together families and children with DESSH who otherwise would never have the opportunity to meet. With less than 70 known cases, families are spread far and wide across the globe. By coming together we seek to gain the knowledge only others with the same challenges can share. Together we will craft an itinerary including speakers in pediatric specialties like neurology, child development and genetics. The money raised through this GoFundMe site will go toward securing a conference venue, bringing in our keynote speakers, and supplementing the costs for print materials, equipment rentals, bus shuttles, and miscellaneous related expenses. On behalf of the families affected by DESSH we thank our families, coworkers and friends new and old for their amazing generosity to this cause.
Funds exceeding our $8,000 goal will go to the Washington University in St. Louis Medical School research fund dedicated to DESSH research. To learn more about DESSH visit www.dessh.org.
Please follow us on twitter @cureDESSH and like us on Facebook to help build awareness of the syndrome in hopes of finding a cure for current and future children diagnosed with DESSH.
After our recent trip to St. Louis, USA to meet the doctor who first discovered this syndrome, Dr. Marwan Shinawi, we are focused on raising $8,000 to host the first ever international meeting for those diagnosed with this syndrome. We are hoping to hold a 1-2 day conference in the U.S. this summer 2019. The goal of the conference is to bring together families and children with DESSH who otherwise would never have the opportunity to meet. With less than 70 known cases, families are spread far and wide across the globe. By coming together we seek to gain the knowledge only others with the same challenges can share. Together we will craft an itinerary including speakers in pediatric specialties like neurology, child development and genetics. The money raised through this GoFundMe site will go toward securing a conference venue, bringing in our keynote speakers, and supplementing the costs for print materials, equipment rentals, bus shuttles, and miscellaneous related expenses. On behalf of the families affected by DESSH we thank our families, coworkers and friends new and old for their amazing generosity to this cause.
Funds exceeding our $8,000 goal will go to the Washington University in St. Louis Medical School research fund dedicated to DESSH research. To learn more about DESSH visit www.dessh.org.
Please follow us on twitter @cureDESSH and like us on Facebook to help build awareness of the syndrome in hopes of finding a cure for current and future children diagnosed with DESSH.
Organisator
Caitlin Cardona Piccirillo
Organisator
Vernon, NJ