Welcome to our updated 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!
Help us #crushchiari and raise funds for critical research and educational programs. Raise $50 and, as a thank you, we will send you a gift… this year’s “Hope on the Horizon” unite@night t-shirt!
These are two ways you can help:
Set up a Facebook Fundraiser during the month of September here
Set up a fundraising page here…
Share the links to your fundraisers in your emails, messages and on social media.
Thank you for your support!
On September 2nd, Dr. Russel “Chip” Norris and, PhD student, Cortney Gensemer team up and give us a peek at some of their lab’s discoveries regarding EDS and genetics at The Norris lab at MUSC! The Norris lab is a multidisciplinary environment with students and postdocs using various genetic, molecular, biochemical and biomechanical tools to understand common and rare connective tissue diseases. Register here!
On September 30th, Dr. James Stadler will be speaking on a topic TBA. Register here.
In an effort to stay connected, our monthly virtual support groups will continue into 2021. We hold a support meeting for PARENTS every second Tuesday of the month at 7:00pm ET, ADULTS every last Tuesday of the month at 7:00pm ET, and HIGH SCHOOL/COLLEGE-age usually every third Sunday of the month at 7:30pm ET.
Parent Support Meeting – September 14th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)
High School/College Support Meeting – September 19th @7:30pm ET, hosted by Roman Fenner
Adult Support Meeting – September 28th @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)
Last month, we hosted our annual Think Tank meeting and its accompanying research meeting to keep our programs on-track! Continued progress was made on the Chiari Surgical Success Scale (CSSS), a proposed randomized control trial for tethered cord syndrome treatment, and other important projects. We are also currently finalizing plans for our 2021 Research Colloquium, which is poised to be held in Austin, Texas on October 16th.
On September 1st, our Ask the Expert series will feature Dr. Russell Norris and Ms. Cortney Gensemer. They will be discussing their incredible work identifying a specific genetic mutation that may be associated with developing Ehlers-Danlos syndrome. It will be a must-see. Register now, if you haven’t already because they will also make time for questions!
This month will also be a busy one for other meetings, too! BJCSF representatives will attend the virtual National Advisory Neurological Disorders and Stroke Council Meeting on September 9-10, 2021. This meeting is hosted by the National Institute for Neurological Disorders & Stroke (NINDS) at the National Institutes of Health. BJCSF will also be present at a workshop also hosted by NINDS to address health disparities and inequities in neurological disorders.
Finally, we will also be attending a meeting for the posterior fossa decompression study funded by PCORI. Trial investigators will be reviewing final data. As a reminder, this study seeks to compare whether posterior fossa decompression with or without duraplasty yields better outcomes. We are grateful to be invited and proud to bring the patient and family perspective to this incredibly important work!
We plan to also continue our work on developing clinical guidelines for Chiari malformation with the Congress of Neurological Surgeons as well as our many other projects. If you have any questions about these or upcoming projects, feel free to reach out at firstname.lastname@example.org!
Dinner Dance for A Cure: October 23, 2021 – Tickets and sponsorship opportunities are now available! Help us celebrate in Twinsburg, Ohio with a tribute to Medical and Essential Workers this year. Register here.
Bobby Jones Classic at Winged Foot: October 24-24, 2021 – The field is filling up! Secure your foursome today, foursomes are limited. Register here.
If you love our work then tell the world! Stories about us from people like you will help us make an even bigger impact for people living with Chiari malformation, syringomyelia and related disorders.
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