Cure JM Foundation
At the Cure JM National Family Conference YOU have a chance to help accelerate JM research. Working with top genetic researchers at the Children's Hospital of Philadelphia (CHOP), Cure JM is seeking to better understand the genetic causes of JM. This research is important to help find better treatments and a cure.
If you participated in the CHOP Research Study at a prior National Conference or at a walk in 2018, please sign up for a timeslot again. If you participated in 2017 or 2018, additional paperwork will be filled out in Chicago and if the patient is present one additional sample may be collected. If you participated at a walk in 2019, you are all up-to-date and don't need to sign up again. Clear as mud? See [email protected] with questions.
Who: All Cure JM families and extended families. You must sign up in advance to participate. Each family will sign up for one time slot and in most cases the collection will not take the full time allotted.
When: Please only sign up for one time-slot per family. Slots are open:
- 7:00 AM-8:15 PM, Friday 6/21/19
- 7:00 AM -8:00 PM, Saturday 6/22/19
View the Cure JM Conference schedule here.
Where: The Hyatt Lodge at McDonald's Campus in the 138 HU Smartroom Conference Room.
What: Please sign up for one time slot. Members of your family will provide a genetic sample. A genetic researcher and phlebotomist from CHOP will be collecting blood and saliva samples. Ideally, blood samples will be collected from each JM patient, parent(s), and sibling(s) in attendance, but saliva samples would also be helpful. Grandparents in attendance will also be asked to either provide a blood or saliva sample.
About the Research:
The Center for Applied Genomics (CAG) at Children's Hospital of Philadelphia (CHoP), with Hakon Hakonarson, PhD, MD and Charlly Kao, PhD. Cure JM has invested in a genetic discovery program at the Center for Applied Genomics (CAG) at Children's Hospital of Philadelphia (CHoP). With their state-of-the-art facility and biobank, the Center for Applied Genomics aims to identify the genetics that play a part in Juvenile Dermatomyositis. The goal is as we find specific genes that regulate autoimmunity in JM and better understand what genetic mutations are at work in those genes, we can find drug interventions to modify genetic behavior.
Frequently Asked Questions:
- How do I prepare for the blood draw? Families should be well-hydrated. If you have numbing cream, you may apply it before your scheduled time slot. Please apply to both the inner arms and port-a-cath.
- The healthy siblings in our family are too young or unable to give a blood sample. Can we still participate? Yes. Although blood samples are preferred, siblings who are unable to give a blood sample can give saliva samples.
- The patient, siblings, grandparents, etc. are not attending the conference. Can we still participate? Yes. Please sign up and we will collect samples from those at the event. We will then provide you with instructions for additional samples to be collected locally.
- 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 and come to the 138 HU Smartroom Conference Room to learn more.
- My child has a port-a-cath. Can they still participate? Yes. Please sign up and come to the 138 HU Smartroom Conference Room. Samples will be collected from the family members of the patient with the port-a-cath. For the patient with the port-a-cath a saliva sample will be collected. In addition, a patient could give a blood sample by vein or take instructions on how to collect a blood sample at the patient's next blood draw by their local healthcare provider. Please sign up and come to the 138 HU Smartroom Conference Room to discuss all of these options to find the best fit for your family.
- I prefer that my JM child 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 family and will collect saliva from the JM child 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/no times that work for me left on the sign up, how do we participate? Please email [email protected] to join the waiting list.
|| Cure JM Foundation