Get Involved

How You Can Help
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Give Back

01. Make a Donation

We are a small group of parents organizing a path forward. We have big plans! Whether itโ€™s setting up a website full of information for parents with a new diagnosis of TFE3, holding our first live convention or hosting a fundraising event to help pay for research, we need funds. Please consider making a donation today!

 

[NOTE:ย  We are not yet registered as a non-profit organization – please still contact us if you intend to donate! we will be in touch.]

Show Up

02. Be a Volunteer

Do you have a talent? Website and social media experience, a medical background, non-profit administration, event planning. We could use your help.

Upcoming Events

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October 12 - Virtual family meet-up

10am โ€“ 12pm EST (2pm – 4pm GMT) Meet in our virtual room with our kids to meet friends, share stories, and connect!