In this edition:

  • Looking back on our inaugural "Rise Above" event in recognition of Kleefstra Syndrome Awareness Day
  • Welcome to the Scientific Advisory Board Steven Gray!
  • Expressing gratitude for #GivingTuesday2021
  • Plus a roundup of other KS-related feel-good news

We held our inaugural "Rise Above" event on September 18th, 2021 in honor of Kleefstra Syndrome Awareness Day.  By all accounts, all those in attendance thoroughly enjoyed the program which featured:

  • A stirring conversation between Margo Metzger and author of "My Own Blood," Ashley Bristowe. Watch It!
  • An inspiring two part conversation with Julie Goff, a young woman living with Kleefstra Syndrome, and Dr. Tjitske Kleefstra.  Watch those discussions here: Part 1 or Part 2.
  • "Time to Shine" Videos of individuals with KS thriving!  Watch their joy! Time to Shine 1 or Time to Shine 2

We had set a fundraising goal of $100,000, and we are beyond excited to announce that we raised nearly $140,000!  Thank you to all of our fantastic team leaders and to all those who so generously donated to our effort.  The money raised will be going directly to research projects.  We know that "focus takes funding," and we are eager to accelerate some promising research opportunities.

Thank you to our planning committee: Mark Clem, Lisa Bachmann, and Darrick Reed.  Your tireless efforts brought about a wonderful event.  Thank you!  Looking forward to next year!

Finally, please take a moment and watch this video of gratitude from us to you:


Attitude of Gratitude

GivingTuesday is a global generosity movement unleashing the power of radical generosity. GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Since then, it has grown into a year-round global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity.

Our chosen theme for this year is an "Attitude of Gratitude."  The past year, we have received the support from volunteers, our partners, our donors, and from so many throughout the rare disease community.  While we continue to aggressively pursue our initiatives, we want to be sure we acknowledge the Herculean effort of the past 13 months.

Despite the challenges we face, we can find comfort in being grateful to those who have extended their support.  We encourage you to join our effort and give thanks.  If inclined, embrace the global the movement and give otherwise – each Tuesday and every day – whether it’s some of your time, a donation, or the power of your voice.


Welcome to the Scientific Advisory Board!

Dr. Steven Gray earned his Ph.D. in molecular biology from Vanderbilt University in 2006, after receiving a B.S. degree with honors from Auburn University.  He performed a postdoctoral fellowship focusing on gene therapy in the laboratory of Jude Samulski at UNC Chapel Hill.  He is currently an Associate Professor in the Department of Pediatrics at the University of Texas Southwestern Medical Center.  Dr. Gray is the director of the UTSW Viral Vector Facility and maintains affiliations with the Department of Molecular Biology, the Department of Neurology and Neurotherapeutics, the Eugene McDermott Center for Human Growth and Development, and the Hamon Center for Regenerative Science and Medicine at UT Southwestern.  Dr. Gray’s core expertise is in AAV gene therapy vector engineering, followed by optimizing approaches to deliver a gene to the nervous system.  His research focus has also included preclinical studies to development AAV-based treatments for neurological diseases, some of which have translated into clinical trials. 


Quick Clips on Kleefstra

  • It Takes A Village: On Sunday, October 24th, Britt Mossink will present her research on EHMT1!  Join the webinar!
  • VOLUNTEERS NEEDED! Are you interested in helping to accelerate our progress?  We currently have needs for a graphic designer, IT support, community ambassadors, and development coordinators.  If you would like to get involved, email us at!

IDefine, Inc
925B PEACHTREE STREET NE BOX 2173  | Atlanta, Georgia 30309

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