Can I count on you to help me celebrate my birthday by giving back?

Help me help Kleefstra Syndrome families, caregivers, researchers, advocates and supporters

Hi all,

I wanted to do something good and make the world a better place. When I found out that Kleefstra Syndrome (KS) is a rare neurodevelopmental disorder caused by a mutation or deletion in the EHMT1 gene, I knew I wanted to help support this cause. IDefine is the leading nonprofit organization for KS families, dedicated to advancing care, fostering community, and funding breakthrough research. Your support helps to fund the movement for answers, treatments, and hope.

That's why I created a fundraiser to support IDefine. With three key areas of focus over the next year, research, the Kleefstra Clinic and the family conference, I felt it was an important time to step up and out by hosting a fundraiser. Your gift helps define the future. Whether you donate, sponsor, or fundraise, you support every family, every clinic visit, and every research breakthrough.—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 Key Funding Priorities (2025–2026) 1. 2026 Family & Scientific Conference-$100,000 Support needed for planning, programming, and logistics Scholarship fund to ensure equitable family participation 2. Sustaining Vital Programs Kleefstra Clinic – Expert care & data collection: $50,000/year Natural History Study – Foundation for trials: $100,000/year 3. Research: Finding Treatment Leads Drug Repurposing Screening Reusing known drugs to compensate for EHMT1 underexpression Partner: Unravel Biosciences / Fly model studies Cost/Timeline: $50,000 Targeted Small Molecule Therapy Testing promising KS-targeted drug candidates Partner: Radboud University + Biotech Cost: $60,000 | Timeline: 6 months Upregulation of EHMT1 ~$50,000 | Timeline: 1 year Gene Therapy (EHMT1 Replacement) Vector delivery to the CNS in development Cost/Timeline: $100k Phase 1: #hashtag

Thanks for being generous!

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 fund our key areas of focus on research, the Kleefstra Clinic and our family conference. Your gift helps define the future. Whether you donate, sponsor, or fundraise, you support every family, every clinic visit, and every research breakthrough. You're not only helping me to reach my fundraising goal, but you're making a real difference for Kleefstra Syndrome families, caregivers, researchers, advocates and supporters.

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. They're doing great work.

Thanks again for your donation!

[Your Fundraiser's Name Will Automatically Go Here]

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