Cure JM Foundation

Participate in Research Study - 2019 National Conference

At the Cure JM National Family Conference YOU have a chance to help accelerate JM research.

Please note, family members who participated by giving genetic samples at the National Conference in Austin, TX or Washington, D.C. do not need to participate againFamily members who did not yet participate are invited to participate by signing up below.  Please contact [email protected] with any questions.  

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.

Who:  All Cure JM families and extended families

When

  • 7:00 AM-8:15 PM, Friday 6/21/19
  • 7:00 AM -7:25 PM, Saturday 6/22/19

View the Cure JM Conference schedule here.

WhereThe Hyatt Lodge at McDonald's Campus (Conference Hotel)

What:  Sign up here for your family to take part by providing 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.

You must sign up in advance to participate.  Each family will sign up for a 35 minute time block, though in many cases the collection will not take the full time allotted.   If you have more than 3 family members participating, please sign up for two time slots.  Time slots don't have to be back-to-back.  Please only sign up for a maximum of two time slots.

Contact Shannon Malloy, [email protected], with any questions. If the time slots are full please email to be added to the waiting list.  

*This is the same research study you may have participated in at the Cure JM National Conference in Austin last year.  Please do not sign up if you participated in this CHOP Research Study at the National Conference in Austin, TX or the National Conference in Washington, D.C., or if your child is a patient treated at CHOP.  Email [email protected] if you have any questions.  

More information on the research:

Center for Applied Genomics (CAG) at Children's Hospital of Philadelphia (CHoP), 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? 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 (please apply to both the inner arms and port-a-cath). If you need numbing cream, please stop by the Guadalupe conference room in advance of your scheduled 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 JM child to give their sample. We will then provide you with instructions for additional samples (such as siblings, additional parents, or grandparents) 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. Time slots don't have to be back-to-back. Please only sign up for a maximum of two time slots. If you have any questions please contact [email protected].
  • 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 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 [email protected], to join the waiting list for this study.
  • My child has a port-a-cath. Can they still participate? Yes. Please sign up and come to the Monroe 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 Monroe 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 parent(s), sibling(s), and grandparent(s) 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] for more information and to join the waiting list.

 

 

Created by:   Cure JM Foundation
 

Date (mm/dd/yyyy) Time (EST) Available Slot
06/21/2019 (Fri.) 7:00am - 7:35am  

Participate in research

 
7:35am - 8:10am  

Participate in research

 
8:10am - 8:45am  

Participate in research

 
8:45am - 9:20am  

Participate in research

 
9:20am - 9:55am  

Participate in research

 
10:45am - 11:20am  

Participate in research

 
11:20am - 11:55am  

Participate in research

 
11:55am - 12:30pm  

Participate in research

 
12:30pm - 1:05pm  

Participate in research

 
2:15pm - 2:50pm  

Participate in research

 
2:50pm - 3:25pm  

Participate in research

 
3:25pm - 4:00pm  

Participate in research

 
4:55pm - 5:30pm  

Participate in research

 
5:30pm - 6:05pm  

Participate in research

 
6:05pm - 6:40pm  

Participate in research

 
6:40pm - 7:15pm  

Participate in research

 
7:15pm - 7:50pm  

Participate in research

 
7:50pm - 8:15pm  

Participate in research

 
06/22/2019 (Sat.) 7:00am - 7:35am  

Participate in research

 
7:35am - 8:10am  

Participate in research

 
8:10am - 8:45am  

Participate in research

 
8:45am - 9:20am  

Participate in research

 
9:20am - 9:55am  

Participate in research

 
11:20am - 11:55am  

Participate in research

 
11:55am - 12:30pm  

Participate in research

 
12:30pm - 1:05pm  

Participate in research

 
1:05pm - 1:40pm  

Participate in research

 
1:40pm - 2:15pm  

Participate in research

 
2:50pm - 3:25pm  

Participate in research

 
3:25pm - 4:00pm  

Participate in research

 
4:30pm - 5:05pm  

Participate in research

 
5:05pm - 5:40pm  

Participate in research

 
5:40pm - 6:15pm  

Participate in research

 
6:15pm - 6:50pm  

Participate in research

 
6:50pm - 7:25pm  

Participate in research

 


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