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, January 22nd @5pm 

Adult Support Meeting – Tuesday, January 31st @7:30pm

Additional Support & Social Services. Patients and caregivers living with Chiari malformation, syringomyelia and related disorders may need help that Bobby Jones CSF can’t provide. For example, many patients and caregivers alike need more help with benefits assistance, clothing/household goods, transportation, employment services, housing/utilities, respite care, legal/financial counseling, mental health and more. These concerns, often referred to as the “social determinants of health” are just as important as accessing care. Social and economic issues can even impact symptom presentation or long-term outcomes of treatment!

To try and fill this gap, BJCSF has partnered with our friends at the Child Neurology Foundation and Unite Us to help connect patients and caregivers with services that can help them in the ways that we cannot! Learn more.

We are busy ramping up our research programs and ongoing projects for 2023! There are few ways you can get involved right now, focusing on anything from the language of disability to the underlying issues associated with Chiari, syringomyelia and related disorders.

Understanding the Language of Disability. Below is a call for research from a current genetic counseling student who is looking to hear from people impacted by various disabilities. This is a great opportunity to improve the research space in the understanding of disability, invisible or otherwise!

My name is Megan Weible, and I am a student researcher in the Genetic Counseling program at the University of North Carolina – Greensboro. I am seeking diverse perspectives about the lived experience of how language interacts with disability and health. I, myself, have a disability and am interested in conducting research in this area as it combines my personal and professional interests. It is important to me that research about our community is done in collaboration with experts – you! If you identify as disabled or as having a disability, have a health condition that influences how you interact with the world, are a disability advocate or activist, a family member or loved one of someone with health support needs, a caregiver, and/or a healthcare provider I want to hear from you! Through this study, I aim to explore language preferences between those who are personally affected by a health condition or disability and unaffected individuals who are advocates, healthcare workers, or loved ones of affected individuals. I would love to hear from those with diverse neurotypes, physical differences, mental health conditions, chronic illnesses, genetic diagnoses, and other health conditions. If you would like to learn more about my story and research, you can watch my Genetic Alliance webinar here: https://www.youtube.com/watch?v=BEwAZHVtURM&list=PLmDcGanXc-MPTUPSDNqpJhaF_RWAgL8SJ&index=1.

Participation in this research study would involve completion of a short survey. The survey should take no more than 15 minutes to complete. Follow this link to participate directly: https://id.lunadna.com/referrer/peer-group-uncg1?studyName=disability-uncg. Complete a short registration process with Luna to gain access to the survey. Thank you so much for your interest in this research. If you have any questions, please reach out to mmweible@uncg.edu.

International Patient Registry. You can also participate in the international patient registry. New publications are currently being written, based on responses many of you have already provided! Don’t forget to also consider connecting your patient health portal and genetic results to your account to improve the data! Got questions? Contact kesposito@bobbyjonescsf.org.