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!
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Every dollar you donate is put to work exponentially. These pages highlight the work your donations have made possible in just one calendar year.
This Sunday, May 7th, Bobby Jones CSF is holding a half day of wellness seminars and then heading to the hill to meet with representatives on Monday. There are 11 states represented and we can’t wait to see everyone! Be on the lookout for the videos from the wellness seminars as we will be video taping all of these amazing sessions.
ABOUT BOBBY JONES CSF: WHAT WE DO AND HOW YOU CAN GET INVOLVED
Bobby Jones CSF Staff Person(s)
POWER OVER PAIN: CULTIVATING RESILIENCE OF MIND AND BODY TO LIVE WITH JOY!
Dr. Cassie Parker, Resilient Wellness PT
NOT SO TOXIC POSITIVITY
RELATIONSHIPS IN CRISIS: AN INTERACTIVE SESSION WITH PATIENTS AND CAREGIVERS
Kristin and Michael Means, Patient, Caregivers & Advocates
GETTING META WITH YOUR MINDSET: CBT APPROACH TO CHRONIC PAIN
Dr. Victoria Felix, Psychologist, Cognitive Therapy for Women Psychological Services
PREPARING FOR YOUR ADVOCACY MEETING ON THE HILL: STRATEGIES FOR SUCCESS
Julie Rauch, Patient, Caregiver & Advocate
WORKSHOP: CRAFTING YOUR OWN PATIENT STORY FOR MONDAY MEETINGS
Julie Rauch & Kaitlyn Esposito, Patient, Caregiver & Advocate & Staff Person
HOPE ON THE HORIZON: EDS RESEARCH UPDATE
Roman Fenner, Former MUSC Norris Lab Intern
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.
Did you know that if you collect $10 from 5 friends, you earn the t-shirt and light up item. Join us for the solo walk and see what prizes you can earn here, based on how much you raise.
Join us as we continue to build the Inspire support platform called Chiari & Syringomyelia Unite! It’s a perfect place to ask questions about these disorders. More information here.
Consider Chiari seminar on Chiari and headache on Tuesday, May 9, 2023. We are excited to be joining our friends at Boston Children’s Hospital for a Chiari and headache conference next Tuesday!
This event will educate medical professionals, providing continuing education credits and will also provide information for patients and families. The featured speakers also include two previous BJCSF medical board leaders—Dr. David Limbrick (current Executive Committee member) and Dr. Cormac Maher (previous Board Chair). Learn more about the conference here.
This month, we will have two virtual Ask-the-Expert meetings and an in-person lecture at MUSC.
VIRTUAL: On Thursday, May 11th at 7:30pm ET, Dr. Kristopher Kahle, Chief of Pediatric Neurosurgery, Massachusetts General Hospital, will have an open Q&A (Pediatric Chiari). Register here.
VIRTUAL: On Thursday, May 18th at 7:30pm ET, Dr. David Harter, Associate Professor, Department of Neurosurgery at NYU Grossman School of Medicine, will be speaking on a topic TBA. Register here.
IN-PERSON: On Thursday, May 25th, Roman Fenner, Bobby Jones CSF Young Adult Ambassador, will be talking about “Hope on the Horizon; A Future Where Patients Lead the Charge Against Hypermobility Ehlers-Danlos Syndrome” at the Medical University of South Carolina, 68 President Street, Bioengineering Building, Room 112, in Charleston, South Carolina. Join us at 5pm for a patient-to-patient discussion group and at 6:30pm for the lecture. Register here.
Have a topic of interest? Contact: firstname.lastname@example.org
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)
New cross-disease health status study NOW available in the international Patient Registry! We, along with our partners at Genetic Alliance, have launched a burden of disease study by the people and for the people. The goal is to understand the burden of disease in multiple disease communities to better prepare our communities for clinical trials! We are hopeful to include information from patients impacted by Chiari malformation, syringomyelia and related disorders.
In this study, we are using the SF-36v2® questionnaire – a short-form health survey that measures each of the following eight health domains: physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, and mental health. Each health domain score contributes to the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores.
If you would like to participate in this study, find the survey in our registry here. If you have issues accessing the study, or questions about the project, contact Kaitlyn at email@example.com.
The Chiari Surgical Success Scale continues to move forward. Last month, the researchers involved in the CSSS study met to discuss current study enrollment numbers and new investigative site onboarding efforts. New sites are also preparing behind-the-scenes to join this study. So far, over 70 adults and children have been enrolled into this study. Learn more about the CSSS study here.
Out of respect for those enrolled participants and for the privacy of their families/protected health information, we do not know who those participants are and we will never ask. However, if you are one of those persons, please know that we at BJCSF and all the families impacted by Chiari and syringomyelia are extremely grateful. Because you are willing to share some information about your treatment journeys and take a little time out of your busy schedules to answer questions about outcomes, you will help countless patients and families in the future!
More research opportunities outside of BJCSF. We think it’s important to let patients and caregivers know about research opportunities outside of BJCSF, as well!
Below are two additional studies that may be of interest to you or someone you know. If you have questions about either study, please contact the named persons in each section.
Study to Assess the Needs for Caregivers. Are you a caregiver of someone with chronic pain, fatigue, or other symptoms? Researchers at the University at Albany, SUNY are seeking volunteers for a research study to understand the experiences of caregivers for individuals with chronic symptoms. The goal of this study is to understand what factors should be considered when supporting caregivers.
If you are interested in participating, please visit the link to access the survey: https://lnkd.in/g2TSYxH2
You may also contact the principal investigator, Darren Winograd, M.A., at firstname.lastname@example.org if you have any questions.
Study to Understand the Economic Impact of Ehlers-Danlos syndromes. Are you or is someone in your household impacted by any of the Ehlers-Danlos syndromes? There is a new study aiming to look at the potential economic impacts of the conditions. See more below.
What is this study about?
To better understand the economic impact of Ehlers-Danlos Syndromes, researchers at Penn State College of Medicine are conducting a survey. The aggregate results will be published and made available to guide health services organization and policy.
You should take this survey if:
About the survey:
Link to the survey: https://redcap.ctsi.psu.edu/surveys/?s=8DNJEWFWP44R7XJL
This study was approved by the Penn State College of Medicine’s Institutional Review Board. If you have questions, please contact: Jane R. Schubart PhD (Associate Professor, Penn State College of Medicine, Hershey, PA): email@example.com
Your help with these important studies is greatly appreciated.
Sunday, May 7-Monday, May 8
Dinner Dance for a Cure “In Paris“
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Registration coming soon
International Night of Light Gala
Saturday, October 28, 2023
Delray Beach, Florida
Tickets and sponsorships coming soon
As you may know, Amazon Smile shut down in February. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we 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!