In this edition:

  • Meet Paul Smith, a KS Dad and pharma expert who has joined IDefine's Scientific Advisory Board
  • Save the Date for Rise Above on September 18th in celebration of Kleefstra Syndrome Awareness Day
  • IDefine is a launch partner for Rare-X! Join our webinar June 26th to learn more about patient data collection
  • Plus a roundup of other KS-related feel-good news!

Meet Paul Smith — KS Dad and Scientific Advisor to IDefine

The mission of IDefine is discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders. It’s a monumental undertaking, but one that is being guided by its Scientific Advisory Board (SAB) consisting of expert scientists from around the world.

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Rare-X Webinar: Saturday, June 26th!

We are excited to have been selected as a launch partner for Rare-X.  RARE-X is committed to transforming rare diseases by ensuring that clinicians, researchers and drug developers have access to ‘The Right Data at the Right Time’, powered by patients’ data.  This parent/patient reported data collection will complement current efforts with both All Stripes and GenIDA.  Please join us for a webinar on Saturday, June 26th at 12pm est to learn more!

Save the Date: September 18th

Rise Above for Kleefstra Syndrome by joining us on September 18th, 2021 at 12:00pm est as we celebrate Kleefstra Syndrome Awareness Day.  This global, virtual event will feature appearances by Dr. Tjitske Kleefstra, Julie Goff, Ashley Bristowe, and a special "Spotlight" shining on those in our community living with Kleefstra Syndrome!  We will be raising money to continue driving the work of IDefine through individual donations, family teams, and corporate sponsorships!  Looking forward to a great event! 

 

Quick Clips on Kleefstra

  • THANK YOU to the Marco Island Academy Key Club for their campaign that raised $1,500 for IDefine!
  • CONGRATULATIONS GRADUATES! Check out Ally Neubauer's "Bubble Walk and Roll" graduation party!
  • AMAZON PRIME DAY: Be sure to utilize Amazon Smile to drive a portion of your purchases to IDefine!
 
 

IDefine, Inc
925B PEACHTREE STREET NE BOX 2173  | Atlanta, Georgia 30309
unlock@idefine.org

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