We can’t do it without you!

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
Patient Advocate

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

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)

Child/Parent Support Meeting – Tuesday, May 9th @6:30 and 7:00pm ET

High School/College Support Meeting – Sunday, May 21st @5pm ET

Adult Support Meeting – Tuesday, May 23rd @7pm ET

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 kesposito@bobbyjonescsf.org.

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 dwinograd@albany.edu 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:

• You or someone in your family has Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD)
• You are 18 years or older
• You have knowledge of your family’s finances

About the survey:

• It is anonymous
• We ask about approximate expenses for 1 calendar year: 2022. It will be good to gather financial expenses related to EDS before you begin(such as medical bills, itemized tax return).
• The estimated time to complete this questionnaire is 30 minutes. It doesn’t have to be finished in one sitting. You can save your responses and complete it later.
• If more than one person in your family has EDS, please complete a separate questionnaire for each family member.

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): jschubart@pennstatehealth.psu.edu

Your help with these important studies is greatly appreciated.