In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks.  At the end of the year, you read the notes and appreciate all the gifts that you have.

At the National Foundation for Ectodermal Dysplasias (NFED), we want to share our Gratitude Jar with you!

Before we go into the month of Thanksgiving, we would like to give thanks to our NFED supporters who have invested in our work so far in 2018.

We’ve accomplished so much with advocacy, support and research this year. It would not be possible without our donors, volunteers and loving NFED families.

Thank you so much for the encouragement, financial support, and assistance that led to these important moments in NFED history. You are truly making a positive difference in our ectodermal dysplasias community.


Month by month, our gratitude jar was full because of you! Here are some highlights.


In January, we received $73,000 in funding. What a great way to start out the year on top! Over 90 donors supported the NFED in January alone. We are so thankful. This money allowed us to continue Family Conference planning on a strong foot, helped us strategically plan Advocacy Day on Capitol Hill, and so much more.


February was Ectodermal Dysplasias Awareness Month, and boy did our community show enthusiasm for this special time of the year! Twenty-five families and individuals created Facebook Fundraisers that helped raise almost $17,000. Thank you. You helped spread the word while funding our important programming.


In March, we launched our first appeal of the year. Once again, 89 of our wonderful donors raised more than $31,000! This was one of our most successful “beginning of the year” appeals in recent years and it was all because of you. Every dollar really does count.


April is National Volunteer Month. Did you know that we have 559 active volunteers who dedicate more than 5,000 volunteer hours to the NFED? You can read more about it here. Thank you to all the people who are committed to helping the NFED succeed!


A big thank you goes out to the Keene family from Colorado. They hosted a tremendously successful Crawfish Boil fundraiser at their home on May 19th. They raised close to $27,000!

We are very grateful to all the families who hold a family-managed fundraiser for the NFED, from small to large. It takes lots of time and dedication to put together an event. You are making a huge difference and impact in the lives of those affected by ectodermal dysplasias. We appreciate you!


In June, we solidified all of our Family Conference sponsors. We give many thanks to the families and wonderful supporters who became a sponsor and who bought an ad in our Family Conference Program. You can read our online Conference program here.

Thank you, fellow sponsors, for supporting the NFED! We are extremely grateful.

  • Louis J. and June E. Kay Foundation
  • The Louis & Gladyce Foster Family Foundation
  • Straumann Corporation
  • Raymond James Financial, Inc.
  • Straumann USA
  • Sandy Family Dentistry
  • Mildren Design Group PC
  • GeneDx, Inc. – BIOReference Laboratories
  • Michael Robert Schiedler, D.O.

June was home to one of our long-time family fundraising events, Rally for Ally! For the past 14 years, this event hosted by the Kelso, Matus and George families has brought in an amazing amount of funding for our programs. This year was no different. This event raised more than $18,000.

Jamie and Hank Duke hosted their 4th Annual Sweat It Out 5K in honor of their son, Nicholas. They raised close to $5,000. Thank you!


At Family Conference, we launched our first-ever 72-hour blitz campaign, Boost the Cure, to raise $50,000 for ectodermal dysplasias research. We were astounded by the amount of support we received from people at Conference and online. You all helped us exceed our goal by together raising over $65,000 in just three days!


We are grateful for the grants and gifts that we’ve received this year from our corporate, foundation and organization friends! This helps keep our financial streams diverse and lessens the burden on our NFED families to financially support our work.

Thank you, to all of our corporate, foundation and organizational supporters who gave to our annual and advocacy funds at the $5,000 and up level (some are also listed under Conference sponsors):

  • TripAdvisor
  • Straumann Corporation
  • Moss Family Foundation
  • The Louis & Gladyce Foster Family Foundation
  • Delta Theta Tau Sorority Inc.


September was a great month for successful NFED family fundraising events!

The wonderful Nehrkorn family raised $15,000 through their 3rd Oliver’s 5K Run/Walk in Wilsonville, Oregon on September 8th! Thank you for your dedication.

Congratulations to the Swierczewski family on their 23rd Annual Bruno’s Golf Outing for NFED. They had another record turnout and raised almost $17,000. We are grateful to everyone who loyally supports this event year after year.

A huge thank you goes out to the Nelsen family, the many volunteers, the participants, the sponsors and donors who made this Don’t Sweat It Walk: The Minnetonka5K in Minnesota such a success. They generated over $45,000 for those affected by ectodermal dysplasias. Everyone had a great, enjoyable and fun time with close to 200 walkers.

Former Board member, Jack Kriz, raised $3,000 through his annual bike ride event. Thanks, Jack!


October is home to our largest fundraiser of the year – the Halloween Bash! All proceeds benefit our important cause – helping families affected by ectodermal dysplasias. This year, our goal is to raise $150,000.

For 12 years, the Halloween Bash was our largest fundraising event and took place in New York City. In 2013, the Geismar family turned it into an online event. Now, no matter where you are, you can be a part of this amazing event!

We will report totals online soon. Here’s to another successful year!

November and December

Our fundraising focus for the rest of the year is on one of our biggest appeals of the year and #GivingTuesday on November 28th. Both of these end-of-year appeals usually bring in approximately $70-100,000 a year for our programming.

Our donors who make a donation every year really make a difference. Your loyalty does not go unnoticed. No matter if you donate $10 or $10,000, we are humbled.

Every dollar is important because we are a small organization. Every dollar counts. We aren’t a big non-profit who spends money on advertising or hiring a celebrity to be a spokesman for our organization. It goes right back into programming.

Our staff of six work diligently to make sure we steward each dollar with the best intention of the donor in mind, to ensure our mission to “empower and connect people touched by ectodermal dysplasias through education, support and research” is enforced in all of our work every day.

William Arthur Ward is quoted as saying, “Feeling gratitude and not expressing it is like wrapping a present and not giving it.” So, for that, we thank you for the gifts you give to the ectodermal dysplasias community.

As we approach November with gratitude and utter thanks in our heart, we wish you many blessings and much gratitude for the wonderful things in your lives.

Take this quick survey to let us know how you feel about your donor experience with the NFED! Your feedback is important to our future fundraising appeals and solicitations.

Open Survey 

Leave a Reply

Your email address will not be published.