Causes: Health, Neurology & Neuroscience
Mission: The Chiari & Syringomyelia Foundation is a non-profit organization that was founded in 2007.In 2019, the family of Bobby Jones and the Chiari & Syringomyelia Foundation partnered to form the Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF), remaining a non-profit organization with the goal of raising awareness and finding a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders. Our mission is to advance knowledge through research and to educate the medical, allied sciences and lay community about Chiari malformation, syringomyelia and related disordersBobby Jones CSF has funded over $6 million dollars worth of education and research projects/meetings in its first 13 years and has impacted more than 3.5 million people around the world, who are looking for answers. Our Scientific Education & Advisory Board is made up of many internationally-renowned medical doctors, professors, scientists and experts. The Board of Directors and Board of Trustees include community and business leaders, educators, legal experts, families and patients, who have long been advocates in the CM/SM community. Their skills and drive to develop, fund, and oversee Bobby Jones CSF programs and research will improve the lives of the over three million families affected by Chiari malformation, syringomyelia and related disorders in the United States, alone.
Results: Bobby Jones CSF is currently the only organization serving patients with Chiari, syringomyelia and related disorders to have earned all three of the following distinctions: BBB Wise Giving Alliance Seal, Guidestar Platinum Seal and the Health On the Net Code. Each year, you can catch Bobby Jones CSF in USA Today’s Giving Tuesday edition, among other nonprofits deemed as both effective in their missions and responsible with their donors’ dollars. We also recently received a 100 out of 100 Charity Navigator score. CSF has partnered with Genetic Alliance and the Platform for Engaging Everyone Responsibly (PEER) to set up the first ever international registry for patients. This registry will use the previously developed Common Data Elements (CDEs) so that all information that you enter can be used in multiple studies not just at a single research institution, but all of the research labs across the globe. We completed the first step of the CDE process in 2016 with the submission and subsequent acceptance of the Chiari I malformation Common Data Elements. You can find all of the NIH-supported CDEs (about Chiari and many other diseases and disorders) in the National Library of Medicine. Our annual meetings include:Think Tank Meetings (annual)CSF Research Colloquia (annual)CSF-Sponsored Hydrodynamics Symposia (every other year)International Patient Database Project (ongoing)Upon scientific review by experts from the Bobby Jones CSF Scientific Education & Advisory Board, we were pleased to fund several grants which were submitted for review in response to our 2012-2013 Request for Proposals.
Target demographics: educate about and fund research on Chiari malformation, syringomyelia and related disorders.
Geographic areas served: United States
Programs: Do you want to volunteer? You can help to organize a unite@night walk, fundraise, organize educational lectures and programs, hold meetings and become an integral part of Bobby Jones CSF's national/international team!Email Cathy Poznik at cpoznik@bobbyjonescsf. org to get started!
Mission: The Chiari & Syringomyelia Foundation is a non-profit organization that was founded in 2007.In 2019, the family of Bobby Jones and the Chiari & Syringomyelia Foundation partnered to form the Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF), remaining a non-profit organization with the goal of raising awareness and finding a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders. Our mission is to advance knowledge through research and to educate the medical, allied sciences and lay community about Chiari malformation, syringomyelia and related disordersBobby Jones CSF has funded over $6 million dollars worth of education and research projects/meetings in its first 13 years and has impacted more than 3.5 million people around the world, who are looking for answers. Our Scientific Education & Advisory Board is made up of many internationally-renowned medical doctors, professors, scientists and experts. The Board of Directors and Board of Trustees include community and business leaders, educators, legal experts, families and patients, who have long been advocates in the CM/SM community. Their skills and drive to develop, fund, and oversee Bobby Jones CSF programs and research will improve the lives of the over three million families affected by Chiari malformation, syringomyelia and related disorders in the United States, alone.
Results: Bobby Jones CSF is currently the only organization serving patients with Chiari, syringomyelia and related disorders to have earned all three of the following distinctions: BBB Wise Giving Alliance Seal, Guidestar Platinum Seal and the Health On the Net Code. Each year, you can catch Bobby Jones CSF in USA Today’s Giving Tuesday edition, among other nonprofits deemed as both effective in their missions and responsible with their donors’ dollars. We also recently received a 100 out of 100 Charity Navigator score. CSF has partnered with Genetic Alliance and the Platform for Engaging Everyone Responsibly (PEER) to set up the first ever international registry for patients. This registry will use the previously developed Common Data Elements (CDEs) so that all information that you enter can be used in multiple studies not just at a single research institution, but all of the research labs across the globe. We completed the first step of the CDE process in 2016 with the submission and subsequent acceptance of the Chiari I malformation Common Data Elements. You can find all of the NIH-supported CDEs (about Chiari and many other diseases and disorders) in the National Library of Medicine. Our annual meetings include:Think Tank Meetings (annual)CSF Research Colloquia (annual)CSF-Sponsored Hydrodynamics Symposia (every other year)International Patient Database Project (ongoing)Upon scientific review by experts from the Bobby Jones CSF Scientific Education & Advisory Board, we were pleased to fund several grants which were submitted for review in response to our 2012-2013 Request for Proposals.
Target demographics: educate about and fund research on Chiari malformation, syringomyelia and related disorders.
Geographic areas served: United States
Programs: Do you want to volunteer? You can help to organize a unite@night walk, fundraise, organize educational lectures and programs, hold meetings and become an integral part of Bobby Jones CSF's national/international team!Email Cathy Poznik at cpoznik@bobbyjonescsf. org to get started!
Health
Staten Island
