Cure JM Foundation

Participate in Research Study - 2019 National Family Conference

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 againIf 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

WhereThe Hyatt Lodge at McDonald's Campus in the 138 HU Smartroom Conference Room.

WhatPlease 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.

 

Created by:   Cure JM Foundation
 
Already signed up? You can change your sign up.

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

Participate in research (2)

 
All slots filled
Sue Carpenter
Sue Carpenter
Denise Koch
Roger & Denise Koch
7:35am - 8:10am  

Participate in research (2)

 
All slots filled
Colleen Marchetta
Marchetta Family
Amy Whitney
Amy Whitney
8:10am - 8:45am  

Participate in research (2)

 
All slots filled
Julie Houpt
Julie Houpt
Marshall Shafkowitz
CHoP
8:45am - 9:20am  

Participate in research (2)

 
All slots filled
Carrie Bernhardt
CarrieBernhardt
sharon ortega
Myranda, Melinda, Patty (cousin)
9:20am - 9:55am  

Participate in research (2)

 
All slots filled
Crystal Hutton
Crystal Hutton
Amanda Couch
Couch Family
10:45am - 11:20am  

Participate in research (2)

 
All slots filled
Tiffany Patterson Hedges
Hedges Family
Leslie Budnick
Leslie Budnick, Glenn, Violet, and Lily Westrom
11:20am - 11:55am  

Participate in research (2)

 
All slots filled
Amy Gleason
Morgan Gleason and Amy Gleason
Parrish Fehrman
Parrish Fehrman Family
11:55am - 12:30pm  

Participate in research (2)

 
All slots filled
Aimee Matlock
Team Matlock
Christine Davis
Madison Davis
12:30pm - 1:05pm  

Participate in research (2)

 
All slots filled
Kathryn Dean
kathryn Dean
Meghan Wilhelm
Meghan Wilhelm
2:15pm - 2:50pm  

Participate in research (2)

 
All slots filled
Simonetta D'Onofrio
Simonetta D'Onofrio
Shannon Malloy
Shannon Malloy
2:50pm - 3:25pm  

Participate in research (2)

 
3:25pm - 4:00pm  

Participate in research (2)

 
1 of 2 slots filled
Stephanie Sprague
Sprague/Martines
4:55pm - 5:30pm  

Participate in research (2)

 
5:30pm - 6:05pm  

Participate in research (2)

 
All slots filled
Derek Austin
Derek Austin
Myah Stuemke
Myah Stuemke
6:05pm - 6:40pm  

Participate in research (2)

 
1 of 2 slots filled
Sharon Ortega
Sharon Ortega and Myranda, Melinda
6:40pm - 7:15pm  

Participate in research (2)

 
7:15pm - 7:50pm  

Participate in research (2)

 
7:50pm - 8:15pm  

Participate in research (2)

 
06/22/2019 (Sat.) 7:00am - 7:35am  

Participate in research (2)

 
All slots filled
Michelle Best
Michelle Best
Shannon Taylor
Shannon Taylor
7:35am - 8:10am  

Participate in research (2)

 
1 of 2 slots filled
Rhonda McKeever
Rhonda McKeever
8:10am - 8:45am  

Participate in research (2)

 
All slots filled
Evelyn Farman
Evelyn Farman
Carlos Ortega Ortega
Carlos Ortega
8:45am - 9:20am  

Participate in research (2)

 
9:20am - 9:55am  

Participate in research (2)

 
11:20am - 11:55am  

Participate in research (2)

 
All slots filled
Barbara Limbach
Barb Limbach
Patrice Moroni
Patrice & Sam Moroni
11:55am - 12:30pm  

Participate in research (2)

 
All slots filled
Rebecca Karsten
Rebecca Karsten
Joy Garcia
Joy Garcia
12:30pm - 1:05pm  

Participate in research (2)

 
All slots filled
Carol Schwartz
Carol Schwartz
Adriana Mendez
Adriana Mendez
1:40pm - 2:15pm  

Participate in research (2)

 
2:50pm - 3:25pm  

Participate in research (2)

 
1 of 2 slots filled
Vickie Tiffany
Tiffany Family
3:25pm - 4:00pm  

Participate in research (2)

 
All slots filled
Kristine Alderfer
Kristine Alderfer
Nancy O’k
Nancy O’Keeffe
4:30pm - 5:05pm  

Participate in research (2)

 
1 of 2 slots filled
Ethan Zelizer
Ethan Zelizer
5:05pm - 5:40pm  

Participate in research (2)

 
1 of 2 slots filled
Liz Ryan
Ryan Family (mom, dad, grandma)
5:40pm - 6:15pm  

Participate in research (2)

 
6:15pm - 6:50pm  

Participate in research (2)

 
6:50pm - 7:25pm  

Participate in research (2)

 
7:25pm - 8:00pm  

Participate in research (2)

 


©2019 SignUpGenius.
All Rights Reserved.
Privacy Policy | Terms of Service