Participate in Much-Needed Research
Center for Applied Genomics (CAG)
This weekend, you have the unique opportunity to help with research which we believe is part of helping to develop a more comprehensive understanding of the genetic causes of JM, which can help lead to better treatments.
... or visit the Guadalupe Conference Room,
Vistas Building, Lower Level, Lakeway Spa and Resort
Need more info?
Contact or visit the Guadalupe Conference Room
Frequently Asked Questions:
How do I prepare for the blood draw? Please review the consent form that will be provided to you in advance. Families should be well-hydrated. If you have numbing cream, you may apply it before your scheduled time slot. If you need numbing cream, please stop by the Guadalupe conference room in advance of your time slot.
The healthy siblings in our family are too young or unable to give a blood sample. Can we still participate? Yes. Please sign up for a time slot. Although blood samples are preferred, siblings who are unable to give a blood sample can give saliva samples.
The siblings and grandparents are not attending the conference. Can we still participate? Yes. Please sign up for a time slot for the parent(s) and/or JM patient to give their sample. We will then provide you with instructions for additional samples (siblings, additional parents, grandparents, or patient) to be collected locally.
Our extended family is attending the conference and would like to participate, should I sign up for multiple time-slots? If you have more than 3 family members participating, please sign up for two time slots.
Additional family such as aunts, uncles, cousins, etc. are attending. Should they participate? If any of the cousins or aunts/uncles have an autoimmune condition, then it is best to get a blood sample. We would want to collect saliva from 1st degree cousins/aunts/uncles even if unaffected by autoimmune disease. More distant relatives who are unaffected by autoimmune disease do not need to give a sample. Please sign up for one time slot for each 3 people that will be giving a sample. Come to the Guadalupe conference room to learn more.
My JM child's father/mother and I are divorced. Do we both need to consent to providing my child's sample? Yes. In divorce situations, without consent from BOTH parents, we cannot collect your child's sample. Come to the Guadalupe room or email for instructions on how to obtain consent from both parents.
My family has already given samples for the NIH Twin/Sibling Study. Should we still participate? We are hoping to not duplicate genetic sequencing work done by the NIH Twin/Sibling study, so your family's samples are a lower priority to collect at this time. Contact , to join the waiting list for this study.
My child has a port-a-cath. Can they still participate? We are still investigating with the researchers to determine if blood can be drawn through a port-a-cath (this has to do with the specifics of the research study). If a port-a-cath cannot be used for the blood draw, families may be asked if they would like to give a sample through the patient’s vein. If a family doesn’t want to try giving blood through the patient’s vein, saliva can be collected from that patient. Instructions will be provided on collecting a blood sample at the patient’s next blood draw by their local healthcare provider.
I prefer that my JM patient give the sample at their next scheduled blood draw. Can we still participate? Yes. Although please keep in mind it is much preferred to collect the samples at the conference when possible. However, please do sign up for a time-slot and we will collect the samples from the parent(s), sibling(s), and grandparent(s) and will collect saliva from the JM patient if they cannot give a blood sample now. We are setting up the process to enable giving samples from home and we will provide you instructions.
There are no open times left on the sign up, how do we participate? Please email to join the waiting list.