Think back to the first time you found the National Foundation for Ectodermal Dysplasias (NFED). Maybe you were a parent with a young child navigating a new diagnosis and a hundred questions. Maybe you were an adult who had never met anyone else like yourself.
Someone answered the phone, wrote back, reached out, or hugged you at a Family Conference. We hope you stopped feeling quite so alone. That moment is why the NFED exists, and you can help create it for families who won’t find us for decades.
For 45 years, the NFED has put people first. We connect families and teach them what we know. We listen when you need support, speak up when the world doesn’t understand, and push forward research so there’s more hope tomorrow than today.
Ectodermal dysplasias last a lifetime, and the next families and next generation will need us just as much as you did. What if the welcome you received from NFED could greet a family 50 years from now? Planned giving makes that possible.
What is Planned Giving?
Over the past several months, many of you have reached out with questions about planned giving: what it is, how it works, and whether it’s only for people with large estates. We’re grateful you asked.
Planned giving is a gift you set up now that takes effect later, often as part of your financial or estate plan. It turns your support into a legacy.
You don’t have to be wealthy to do this. A gift of any size becomes part of the story. In 1983, Barry Manilow made a $1,000 gift that started the Treatment Assistance Program, which helps U.S. residents diagnosed with ectodermal dysplasias pay for critical medical and dental care.
More than 40 years later, that single gift has helped hundreds of families get the care they need. Your gift can ripple through generations, too.
The Classic Way: A Bequest
A bequest is a gift in your will. You can leave a set dollar amount, a percentage, or whatever remains after you’ve cared for your family. Your attorney can often add it with a short note to your current will, and you can change it whenever you like.
Other Ways To Give
You don’t need a new will for these. Here are other ways to give:
- Donor-advised fund: Recommend a grant to the NFED, or name us as a beneficiary of your fund.
- Retirement account: Name the NFED as a beneficiary of your IRA through your plan administrator.
- Stock or life insurance: Give shares of stock, or name the NFED as a beneficiary of a life insurance policy. Your financial advisor can help you decide if either fits your plans.
What Planned Giving Makes Possible
A legacy gift means a new family gets a warm welcome at a Family Conference decades from now. It means a student has the resources to speak up for herself at school, and researchers have the funds to make critical breakthroughs that change life with ectodermal dysplasias forever. It creates change for your children, grandchildren and great-grandchildren.
“We know planning for the future isn’t always easy to think about, and caring for your immediate family should always come first. But every family who finds the NFED today is standing on the generosity of someone who came before them. A legacy gift is a way of saying to a family you may never meet: you’re not alone, and we made sure someone would be here for you. I have been so grateful to hear from our community recently a real desire to know how they can do just that.”
Greg Klimovitz, NFED Executive Director
Your Next Step
If you’d like to include the NFED in your estate plans, we’d be glad to provide our legal name and tax ID for your attorney. If you’ve already included the NFED in your plans, please let us know. We’d love to say thank you.
Whatever you decide, there’s no pressure and no timeline. Some of you will make a planned gift, some will give in other ways, and many already give so much through your time, your stories, and your presence in this community. All of it matters. Thank you for trusting us with your family’s journey, and for helping make sure the next family who finds us feels just as welcome as you did.
(Please note: we’re not legal or financial advisors. Everyone’s situation is different, so we always encourage you to talk with your own attorney or financial professional before making a planned gift.)
Have a question or comment? Contact us.