Since Darrick and Tiffany Reed of Olathe, Kansas received their daughter 9-year-old Brianna’s Kleefstra Syndrome diagnosis in early 2018, they have been taking steps to learn more about KS, connect with other KS families and raise money to help identify treatments.

In October, the Reed’s held their third annual Brianna’s Brigade, a fundraising walk benefitting IDefine. This year’s event raised more than $12,0000.

“Brianna's Brigade is important to our family because it allows us to accomplish three important things through the event,” said Darrick. “First of all, it's Brianna's ‘Big Day’ where she feels special and can spend time with family, friends, teachers, therapists and all of those who are making such a positive impact on her life.

“Secondly, it provides an opportunity for us to say ‘thank you’ to those individuals who have invested so much into her life. And finally, it allows us to fundraise for the entire Kleefstra community and make an impact for all of those impacted by this condition, which is important to us.”


Our vision for a better world is one in which our loved ones with Kleefstra Syndrome are provided the opportunity to reach their potential by way of:

  • A supportive, community ecosystem
  • Quality, coordinated clinical care
  • Targeted treatments to offset the impact of Kleefstra Syndrome

This Giving Tuesday, we would love your support!  Here are 5 suggested ways in which to GIVE:

  • GIVE TIME: Volunteer to grow and strengthen our community
  • GIVE YOUR VOICE: Advocate for KS through legislation or letters of proclamation
  • GIVE MONEY: Donate to help fuel our mission
  • GIVE SKILLS: Help our organization progress through your expertise
  • GIVE INSPIRATION: As with the butterfly effect, your actions can create big actions downstream.  To the parents: Never underestimate yourself as the parent of a child with special needs

If you are inclined to donate, Meta will be matching up to $7 million dollars to eligible nonprofits on Facebook!  Matching for Giving Season begins on November 15, 2022 and goes until December 31, 2022, or until the $7 million match fund is spent.

Our goal is to raise $100,000 from now until the end of the year!  It's a BIG goal, but we can do it. Funds will support the Kleefstra Clinic, research projects, and our conferences through your gift. Every amount counts! Every amount matters!

Opportunities to Give:

THANK YOU for joining us for Giving Tuesday and for supporting us on our journey!  We are all #buildingabrighterfuture for our loved ones impacted by Kleefstra Syndrome!

We have great momentum with plenty of opportunity to add more participants in this study!

As a refresher, Lottie Morison (PhD candidate and speech pathologist) and Professor Angela Morgan are researchers from Melbourne, Australia. Together with families from the international Kleefstra Syndrome community, Angela and Lottie are researching speech and language in individuals with Kleefstra Syndrome (KS).

Since June 2022, over 90 families have expressed interest, with individuals with KS from less than 1 year old to their mid 30s. Currently, 60 families from over 15 countries have consented to participate, making this research the largest study of individuals with KS to date!

The team has reported that they are already learning so much about the range of communication strengths and
features in individuals with KS. This information will help us understand how speech and language develops, what supports might suit individuals best, and the communication similarities and differences in individuals with KS.  

Join in today!  The study is still welcoming participants
until early 2023.


Quick Clips on Kleefstra

  • Neuroscience Renaissance: A recent article in Forbes details why many biotech investors and scientists are saying they see significant promise in the emerging era of precision neuroscience. Their optimism is fueled by new platforms for data collection, new biomarker modalities, and new computational methods. 

  • Mecha Noodle Bar:  We are thrilled to announce a partnership with Mecha Noodle Bar for the month of December!  The restaurant group launched an initiative, Eat Justice, that selects a nonprofit organization every month to give to.  For every bowl of ramen sold during the month from all of their restaurants, $0.50 will go to IDefine!  We have set a $15,000 goal!  Please support them, share this, and ask other restaurants to participate!  Connect them with us, and we can take it from there! 

  • Host a Fundraiser and Get Involved: We invite you to lean into our effort to build a brighter future for our loved ones.  IDefine is seeking help for conference planning, community development, and fundraising.  If you are interested in helping to push our initiatives forward, please reach out today at  Help define a new future!


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

Follow Us

Having trouble viewing this email? View it in your web browser

Unsubscribe or Manage Your Preferences