KMT2B is under fiscal sponsorship through Rare Village Foundation which is a 501(c)3 tax-exempt organization, and your donation is tax deductible within the guidelines of U.S. law. Please keep your receipt as your official record. We'll email it to you upon successful completion of your donation.

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KMT2B Dystonia Foundation

From isolation to information — for every KMT2B family.

When Elizabeth’s son, Max, and Lynn’s daughter, June, were diagnosed with the rare KMT2B gene mutation, both moms found themselves confused, isolated, and terrified. The KMT2B Dystonia Foundation was born from their shared struggle and a powerful promise: No family should have to walk this path alone.

Families facing rare diseases often feel invisible—but with a foundation, we become a force. By partnering with NORD, we’re building a secure patient registry: the key to unlocking research, treatments, and real hope. This work is urgent and life-changing, but we can’t do it without your support. Your donation helps us give families a voice, researchers the data they need, and pharma a reason to act. Every gift moves us closer to answers. (Our first fundraising effort is to raise the money necessary to secure a KMT2B patient registry on NORD's platform ($20,000+ for the first year & $5,000+ each additional year). We are also raising money for the start up fees incurred to legalize our 501(c)(3) status including applications, memberships, legal, digital presence expenses, etc.)