Welcome to our News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!
I was born and raised in Fort Pierce, Florida, which is where I met my wife, Katie, during our junior year of High School. After both graduating from the University of Florida, we married in 2009 and began the next chapter of our lives in Montclair, NJ. I began work as a junior Landscape Architect at ARGOS Design and was involved in various stages of the design/construction process from residential sized to large scale community master planning projects. My career was short-lived, as 18 months later I accepted an opportunity to relocate back down to Vero Beach, Florida and work alongside my father-in-law supplying clean petroleum products to various domestic and international customers.
Amongst the many blessings in our lives are our four children Sadie, Liza, Easton, and Beau. It was through Easton’s experiences and subsequent discoveries that our family crossed paths with the Bobby Jones Foundation and its’ wonderfully supportive cast. After suffering from a longer than normal seizure episode in the summer of 2020, Easton underwent further neurological testing and was incidentally diagnosed with Type 1 Chiari Malformation in addition to platybasia and childhood epilepsy. The trajectory we had envisioned for our family’s future had quickly spun 180 degrees in a matter of minutes. Soon after this diagnosis, on September 3, 2020, Easton underwent decompression surgery at the tender age of six.
The sheer magnitude of the diagnosis, let alone the emotional trauma associated with having to watch your child undergo and recover from such an invasive surgical procedure was all but destroying Katie and I’s mental well-being. It was difficult to find anyone who truly understood the gravity of the situation, the emotional and physical toll from both a child’s and parent’s perspective. Enter the Bobby Jones Foundation. Through newfound connections, seminars, fundraising events, and support groups our family has been able to comprehend, cope with, and ultimately fully accept the implications associated with this disease. Two and a half years into our journey, our hope is to be able to provide further support to those suffering from the effects of Chiari malformation and related disorders via a continued involvement with the Bobby Jones Chiari & Syringomyelia Foundation and its quest to find a cure.
For the past few years, Bobby Jones CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening.
To keep the momentum moving forward, we must continue making our voices heard… Right now, we have the following states represented and would love to include more: Florida, Maryland, Missouri, New Jersey, New York, Ohio, Pennsylvania, Virginia, Rhode Island and South Carolina.
Register here! For additional information, visit our unite@thehill page.
unite4answers is a collection of fundraising events around the country to help fund medical research and education programs that foster better answers. These events bring people together who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome and related disorders. You can read more about unite4answers here.
We invite you to join us as an Event Chairperson, participant, or solo walker. If you are interested in chairing a unite4answers event, please register here.
To become a 2023 National Sponsor for unite4answers and be included on the back of the t-shirt, please see the below information and send in the form or complete the sponsorship form online here. The deadline to be included on the 2023 t-shirt is 4/1/2023.
Introducing this year’s incentive prizes. See them here!
This month’s Virtual Ask the Expert will be announced shortly.
Have a topic of interest? Contact: email@example.com
We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET, for ADULTS every last Tuesday of the month at 7:00pm ET, and for PARENTS and CHILDREN quarterly, on the second Tuesday of the month.
The Children’s support meetings will take place just prior to the Parent’s meetings, at 6:30pm ET. A parent or caregiver must be present with the child at the children’s meetings. Registration is part of the Parent’s registration (there is an extra question to answer regarding whether you will be attending the child’s meeting at 6:30pm)
High School/College Support Meeting – Sunday, March 26 @5pm
Adult Support Meeting – Tuesday, March 28 @7pm
OPPORTUNITY: Diversity in Rare Disease. The Rare Disease Diversity Coalition and the National Organization for Rare Disease (NORD) have come together to develop a first-of-its-kind survey to better identify health equity issues in underrepresented patient groups living with rare disease.
If you have about 20-30 minutes, please consider completing this survey and advancing this work towards improving health equity! Get started by visiting: http://www.rarediseasediversitysurvey.org/
MEETING: Innovation & Transformation – Normal Pressure Hydrocephalus (NPH) Symposium. BJCSF will be virtually attending this meeting to be held on March 13th in Europe as part of our ongoing partnership with the REVERT project and consortium! The meeting will showcase the achievements and impact of the REVERT project, including increased public and professional awareness of NPH, and the development of cost-effective clinical pathways and innovative diagnostic tests. The meeting will feature presentations from leading international clinicians and scientists, as well as patients sharing their experiences of the condition and the effects of treatment. The REVERT project is a 3-year, cross-border project funded by the European Regional Development Fund, involving a consortium of eight partner organizations led by the University of Cambridge. It has focused on improving the care and quality of life for patients with NPH.
PARTICIPATE: International Patient Registry – Always Enrolling! As always (if you haven’t already!) make sure you join the international patient registry for Chiari, syringomyelia and related disorders. We are hopeful to start a project soon that will help us develop evidence-based resources for transitioning care from pediatric to adult health care for individuals with Chiari malformation and syringomyelia. If resources like this are important to you, make sure you are already a part of the registry before it gets started! Get started at: https://bobbyjonescsf.org/keytoacure/
Casino Night “Night at the Races”
Honoring Dr. Jeffrey Greenfield, Weill Cornell Medicine
Saturday, March 4, 2023
Staten Island, New York
Purchase tickets, a sponsorship, or journal ad or make a donation here.
Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
Secure your playing spots or sponsorships now!
The Calamity Jane Charity Cup Benefiting Bobby Jones CSF
Bobby Jones Golf Course
Registration coming soon
Dinner Dance for a Cure “In Paris“
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Registration coming soon
As you may know, the Amazon Smile initiative will shut down by February 20th. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we have received over $11,000 from your everyday shopping!
We know you are passionate about Bobby Jones CSF and want to let you know that we are now partnering with the ShopRaise app, which gives a portion back to us whenever you do your normal shopping online at over 1,000 stores like Macy’s, Home Depot, and Walmart.
Please help us support and promote our program by doing these 3 simple things:
Click here to get started. With your help, we can make a difference in the lives of the community we serve!