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.

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, June 25th @5pm ET

Adult Support Meeting – Tuesday, June 27th @7pm ET

Chiari Surgical Success Scale Updates. There are 81 participants actively enrolled in the study so far, with 3 different sites enrolling. Data collection is complete for 9 of those participants already! Learn more about the goals of the CSSS study on our website.

Physical and Mental Well-Being Study. Have you signed up for the study measuring overall physical and mental health in multiple diseases? Participation from patients and caregivers living with Chiari and syringomyelia will be critical to future clinical trials, providing biomarkers and outcomes to be measured for future trials. This is the second study we’re launching as part of a clinical trials readiness project– preparing our population for advances in treatments down the line!

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.

External Research Opportunities. Don’t forget about a few of the other studies that folks have let us know about! Surveys will be closing very soon!

1. 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, SUNYare 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.

2. 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 approximateexpenses 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