Help Support Kleefstra Research/Treatment

We Can Find a Treatment: Help me help our loved ones with Kleefstra syndrome

Hi all,

During this season of giving, I wanted to reach out with an update. Kleefstra syndrome KS), caused by a mutation of a single, vital gene, EHMT1, has no cure or treatment, and it has impacted our family. It is the kind of news no parent is prepared for. The daily reality of KS means our children face profound challenges, including limited or no speech, sleep disturbance, significant cognitive impairment, and often difficult-to-control seizures. The burden on our families throughout the KS community is immense, and the need for a solution is urgent!

That's why I created a fundraiser to support IDefine-The Kleefstra Syndrome Foundation. IDefine supports our community through conferences and have developed the Kleefstra Clinic, a specialized clinic at Boston Children's Hospital. IDefine's efforts have positioned our Kleefstra community to be "Research Ready," and we are now moving from preparation to action. It is time to unlock the potential by making strategic, "Treatment Focused" investments right now!

This is a critical pivot, and we are launching the Turn Up the Volume: $500K Treatment Push campaign to fund FOUR essential projects to hopefully identify a treatment lead. The investments will fund a three-pronged scientific attack—a unique portfolio of projects designed to bring real-world, tangible improvements to children with KS. This coordinated, "Treatment Focused" approach complements our ongoing work and is the fastest, most responsible way to accelerate life-changing treatments. Every dollar you contribute directly funds scientists working on these breakthroughs—moving us past the devastating diagnosis and towards the possibility of a healthier, fuller life for our loved ones—and you can be a part of it.

Check out my fundraising page and please consider making a donation to help me reach my goal of [Your Fundraiser's Goal Will Automatically Go Here].

Give today.

Giving online is easy and fast, and your support will make a real difference. I appreciate your help!

[Your Fundraiser's Name Will Automatically Go Here!]

I just started a fundraiser for IDefine! Help me reach my goal to support IDefine's campaign in making strategic, treatment focused investments right now. This is a critical time and opportunity, and I would love your support of the Turn Up the Volume: $500K Treatment Push campaign to fund FOUR essential projects for Kleefstra syndrome! #rarediseaseresearch #fundraising

Thank You for Helping Unlock the Potential!

Hi [Donor Name],

Thank you so much for your generous donation to my fundraising campaign for IDefine! Because of you, we'll be able to move from preparation to action. It is time to unlock the the potential of our efforts by making strategic, treatment focused investments right now. This is a critical pivot, full of excitement and hope, designed to bring real-world, tangible improvements to children with Kleefstra syndrome (KS). The coordinated, treatment focused approach complements ALL of our ongoing work and is the fastest, most responsible way to accelerate life-changing treatments for our loved ones. Every dollar you contribute directly funds scientists working on these breakthroughs—moving us past the devastating diagnosis and towards the possibility of a healthier, fuller life for our children. You're not only helping me to reach my fundraising goal, but you're making a real difference for Individuals with Kleefstra syndrome (KS).

This is such a worthy cause and I'm proud that we're on the same team.

I'll keep you posted on our progress. In the meantime, I recommend that you check out IDefine on all of their social channels and website. They're doing great work to help our community!

Thanks again for your donation!

[Your Fundraiser's Name Will Automatically Go Here]

You're amazing and making a big difference. Thanks to all who donated to my fundraiser so far!