In this edition:

  • Join the Gene Fixers club
  • Show Your Stripes: Rare Disease Day is Feb. 28
  • 2nd Annual Kleefstra Syndrome International Family & Scientific Conference details!
  • Plus a roundup of other KS-related news
 

Join the Gene Fixers club

Kleefstra Syndrome parents are always looking for more information to better care for their KS loved ones on a day-to-day basis, and of course potential treatments and a cure.

A relatively new and popular audio-based social media app called Clubhouse is a great new source for just such information. The app allows groups to form “clubs” where people around the world can talk, listen, and learn from each other in real-time.

Gene Fixers and Cure Odyssey are clubs hosted by a couple of powerhouses in the rare disease space, Ethan Perlstein and Julia Vitarello.

“The hour-long conversations are super informative, I’ve learned so much by listening in,” said Geoff Rhyne, CEO of IDefine. “I really encourage our KS families to check them out.”

Gene Fixers brings on two prominent guest voices, such as scientists, CEOs, and government regulators to anchor the conversations and tackle difficult subjects.

Clubhouse does not require a special link or registration, all you need is to download the app. You can join Gene Fixers conversations live on Thursdays at 3 p.m. EST or listen to replays....

 

Rare Disease Day is Feb. 28

What better way to recognize Rare Disease Day on Feb. 28 than with a unique piece of art featuring the official symbol of rare diseases in the United States, the zebra?  

These beautiful 5x7 zebra prints created by Maggie Rubin of Aqua Love Studio can be ordered with or without KS Rare Warrior text and name personalization. Best of all, proceeds will support IDefine.  

The cost is $25 for a print, $15 for digital image, and $35 for both. Prints can only be shipped to addresses in North America. Those outside of North America may purchase the digital image only.

To order, simply complete this Google form. To ensure delivery by Rare Disease Day, orders must be received by Feb. 20.

 

Save the Date: March 24th

We are excited to announce the 2nd annual Kleefstra Syndrome Family & Scientific Conference! We are so grateful to the Kleefstra Syndrome Europe Alliance, The Translational Neuroscience Center at Boston Children’s Hospital, and Radboud University Medical Centre in helping us bring this conference to fruition. This virtual conference seeks to bring Kleefstra Syndrome patients, our community of caretakers and organizers, doctors, and researchers to the table in the spirit of collaboration.

We are thrilled for the chance to share this time together and for the opportunities that this new year holds for us to unlock and activate the limitless potential of each and every person who makes up this incredible community. Be on the lookout to register soon! 

 
 
 
 

Quick Clips on Kleefstra

  • Meet + Greet for KS Teens + Adults: IDefine Community invites all KS teens and adults to our first meet and greet on Sunday, March 13th at 1pm est!  We will get to hear from our very special guest presenter, Ms. Brooke Huxtable. Brooke will share about her diverse interests and talents, as well as her outlook on thriving while living with disabilities.  All attendees will then be given the opportunity to introduce themselves and share something special about their lives.  We encourage caregivers to facilitate the conversation for their kids from behind the scenes. The hope is for this to be a springboard for wider conversations and friendships among our KS youth and families. Register here: IDefine Community Meet + Greet

  • Stay in Touch: We are thrilled that you are reading our monthly newsletter!  Stay in tune with all the latest and greatest updates related to Kleefstra Syndrome and the IDefine community by following us on Facebook and Instagram. 

  • Virtual Coffee: Our friends over at KleefstraSyndrome.org are hosting a virtual coffee afternoon.  Bring a mug of your favorite drink (or a glass 😊), sit down, relax, and join in for a chat.  The event will be held Saturday, March 12th at 12pm est.  Email info@kleefstrasyndrome.org to receive the Zoom link! 

  • Fundraising Fun: If you enjoy delicious BBQ, live music, libations, great company and experience the joy of coming together as a community for an amazing cause, then consider joining us for Southern Roots: A BBQ Reunion on Saturday, April 30, 2022 in Travelers Rest, South Carolina. Proceeds from the event will be benefiting IDefine!!   

  • Data is Power: As parents and caregivers, there are so many questions around why are loved ones with KS are impacted the way they are.  To provide clarity, we must aggregate the experience as much as possible through answering surveys and participating in data collections.  To be a part of the solution, we encourage you to enroll in RARE-X and All Stripes to drive improved care and research!  Click on them and help us reach our goal of 100 patients enrolled in each!  #KSStrong
 
 

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

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