Give Back
01. Make a Donation
We founded the TFE3 Foundation to ensure no parent ever hears that their child’s potential is “limited” simply because the research hasn’t been funded yet. We are at a critical tipping point. Your donation goes directly toward:
Connecting the Dots: Bringing these global researchers together to share findings and accelerate a cure.
Empowering Families: Providing resources like this website and fostering community.
Supporting Research: Funding clinical trials of mouse model findings. Further funding for our secure registry that gathers data and analyzes options for drug repurposing. Hiring research assistants dedicated to TFE3.
The TFE3 Foundation is partnered with, and operating under, the fiscal sponsorship of the Rare Village Foundation, a 501(c)(3) nonprofit organization. Your donation is tax-deductible within the guidelines of U.S. law. 100% of collected funds will be used to fund TFE3 Foundation initiatives. We’ll send a receipt to the email address you provide when donating. The receipt will include your donation details, such as the date, amount, and any beneficiary information. You can use this receipt to claim your donation as a deduction on your U.S. taxes.
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.
RESEARCH NEWS
We have recently heard from researchers at the University of Michigan who are currently working on TFE3-associated neurodevelopmental disorders, and are in need of tissue samples through Coriell. Four labs worldwide (that we know of so far) are working on mouse models to understand this condition. Please help by sharing cell samples with Coriell! (See Below)
Two Ways to Help Research
Join the TFE3 Medical Registry
The first step to helping our kids, is to build a secure registry where researchers and doctors can look at and analyze data and information about TFE3, as it presents itself in real people. Through the generosity of Castor, we have established a TFE3 registry. A prototype is being launched in the US, with a goal to extend abroad in the future.
We need you! Key to gaining interest from researchers and beyond is enrolling as many families affected by TFE3 as possible. Click the register link below for more information.
Medical registries, or collections of patient data, are an effective tool to help fill information gaps. For rare diseases especially, registries generate a direct pipeline between patients’ experiences and healthcare providers’ approaches to delivering care. While registries provide crucial medical information, it’s important to note these programs are not prescriptive in dictating care, but rather serve as a system to collect observational data for research purposes.
Please Contact us for Registration Info
Biobank Cells for Genetic Research
Ongoing research requires genetic samples!
TFE3.org strives to bring the TFE3 community of families, clinicians, and researchers together and build a platform to share resources, including clinical patient samples that are valuable for advancing research and treatments for TFE3 neurodevelopmental disease. We are currently working with the Coriell Institute of Biomedical Research to build and maintain a centralized Repository of cells from blood or tissue samples from those affected. Cell lines and DNA from those samples are cataloged and banked for use by scientists conducting genetic research. Families all over the world can either share with Coriell existing tissue or blood samples (See “Share Existing Samples” immediately below), or if none are available, have new samples taken. (Skip down to “New Samples”) There are no costs associated with banking cells at Coriell, the patient family (submitter) will be able to add one research lab as a “designee” to freely access the cell line for research, and Coriell is accessible to work with each family as needed based on the family’s situation.
For more information, see the Coriell Donor Portal Home.
* Share Existing Samples
Many of the families that have a TFE3 diagnosis have already had samples taken in order to receive their diagnosis. Those samples are often banked by their local labs or hospitals for future research and testing, so it is a simple matter of submitting a few forms to share those samples with the Coriell biobank.
Per Coriell, 3 forms are needed to accompany the submissions.
1. The NIGMS Investigator Submission Form (to be completed by the PI at the housing facility) There may be some fields to be input by the donor. Clinical documentation should be included with the sample (or have them send it to us directly and independently as to not release personal information to other sources)
2. A Blank copy of the Consent Form used at the time the sample was taken (obtained from the housing facility)
3. The NIGMS Transfer Consent Form (to be completed by the donor family).
Once those 3 forms are received and samples are approved for acceptance, Coriell will then send the facility an empty shipping container to arrange the sample transfer.
* New Samples
1. Contact Coriell at [email protected].
2. Make an appointment with your doctor to collect the sample. (Can be done as part of another medical appointment or procedure.)
3. Coriell will send you a sample collection kit, free of charge, which includes instructions and all necessary materials for the sample collection and return of the kit, including a prepaid return shipping label. You must submit supporting clinical data (e.g. genetic test results, medical records, physician summary records) which describe the diagnosis. The more additional information you provide, the more valuable the sample will be for researchers.
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