• March Newsletter 2025
  • Family Conference 2023
  • 9th Symposium 1
  • First Legacy Guardian Peggy Davis


OUR MISSION

In our drive to find a cure for Neurodegeneration with Brain Iron Accumulation (NBIA),
we provide support to families, educate the public and accelerate research with collaborators from around the world.


 

News

NBIAcure prepares to submit for FDA
approval of CoA-Z compound

 

Educational Resources

​Posters, flyers and
other educational handouts

 

We are all used to planning every day whether it’s to take care of our children, our families, our homes or issues at work. We make plans so that when we are not at home or at work, someone responsible will carry out our instructions.

The same concept applies to estate planning. What’s that?  Fundamentally, estate planning is good stewardship of your financial and personal resources so that you have a plan in place to care for your family. It may involve a will or revocable trust, appropriate insurance, planning with retirement assets, or some other kind of financial plan.

When a child with special needs is a possible beneficiary, all adult family members should be involved, including parents, grandparents and older siblings. Their estate plans should supplement but not interfere with benefits the child may be entitled to receive. Such mistakes can require expensive court proceedings to correct.

Sadly, a majority of Americans die without a valid will. In some respects, we all have a will – your state makes one for you if you die without preparing one. But state laws that govern how your property passes without a will often fail to meet the needs of surviving family members – especially if a member of your family has special considerations. They also fail to honor your charitable intentions – another part of estate planning.

Achieving the goals of research and a cure for NBIA depends on financial support today and in the future. A bequest under your will or from your revocable trust is the simplest way to make a gift of future support to NBIA Disorders Association. You may include language similar to the following in your will or trust:

“I give [the sum of $_____ or _____ percent (__%) of my residuary estate] to NBIA DISORDERS ASSOCIATION, INC., a not-for-profit corporation located in El Cajon, California, for its general uses and purposes.”

 

Please note: The information contained in this article is not intended to be legal or tax planning advice. Please consult your attorney or tax advisor for advice concerning your estate plan.

*Megan Thomas is director of the NBIA Disorders Association’s Planned Giving Program and a lawyer.

 

 

Partners

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