Leave a Legacy
Help change what a NARS1 diagnosis means for future generations
A gift in your will or estate plans can help fund the research needed to better understand NARS1 Disorder, develop potential treatments and create a better future for children and families affected by this ultra-rare condition.
By choosing to leave a legacy to The Rory Belle Foundation, you can help ensure that this work continues for generations to come.
Why leave a legacy to The Rory Belle Foundation?
NARS1 Disorder is an ultra-rare genetic condition affecting children and families around the world. Because so few people are diagnosed, research funding is limited and there are still significant gaps in our understanding of the condition. There is currently no cure.
The Rory Belle Foundation was created to change that.
We fund and accelerate research, bring together scientists and clinicians, support the development of the tools needed to investigate potential treatments and connect a global community of NARS1 families.
For a condition as rare as NARS1 Disorder, charitable funding can make research possible that might otherwise never happen.
Your legacy can become part of that progress.
100% of your gift goes to research.
Our operational costs are fully covered by grants. That means 100% of what you leave us goes straight into research for NARS1 Disorder — nothing is spent running the Foundation itself
Your gift can move research forward
A legacy gift could help support:
Research into the biology and mechanisms of NARS1 Disorder
Disease models that allow scientists to understand the condition and test potential therapies
Studies that help researchers understand how NARS1 Disorder affects people over time
Research into potential treatments and therapies
Collaboration between researchers, clinicians and families around the world
The evidence and infrastructure needed to move promising discoveries towards clinical trials
Every research project adds to what we know. Every new discovery can bring us closer to better answers and better treatments.
Ways to Leave a Legacy
A gift in your will or living trust. Include The Rory Belle Foundation for a set amount, a percentage of your estate, or what's left after you've provided for your loved ones.
A beneficiary designation. Name us as a beneficiary on a retirement account, life insurance policy, or investment account — no need to change your will at all.
A donor-advised fund. Recommend The Rory Belle Foundation as a beneficiary of your fund, now or in the future.
Stock or other assets. Gifts of appreciated stock can be a tax-smart way to give.
No gift is too small to matter, and none of these commitments cost you anything today.
If you are interested in leaving a legacy, you can download this as a one-page PDF to bring to your attorney.
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No, you don't need to tell us. You're never required to disclose a gift or its value. But if you'd like to let us know, we'd be honored to thank you and keep you connected to the progress your gift will help make possible.
If you do want to let us know email - hello@therorybellefoundation.org
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A residuary gift is a percentage of what's left in your estate after your other wishes, gifts and expenses have been taken care of. It's a popular option because you're leaving a share of your estate rather than a fixed amount that might not make sense years from now.
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Yes. You can name The Rory Belle Foundation as a beneficiary on a retirement account, life insurance policy, or other financial account. It's one of the simplest ways to leave a gift — you won't need to update your will at all, just the beneficiary form with your account provider.
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No. Every legacy gift matters, whatever its size. Research into NARS1 Disorder depends on a small community of families and supporters coming together, and any gift becomes part of that progress.
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100%. Our operational costs are already covered by grants, so every dollar left to The Rory Belle Foundation goes directly into research — not overhead, not admin.
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Yes. Many of our families and supporters live outside the U.S., and it's often possible to include The Rory Belle Foundation in your will no matter where you live. The exact process, and any tax benefits, depend on the laws where you live, so we'd recommend speaking with a local estate planning advisor early on. Let us know which country you're in, and we're happy to help you think through the right approach.