MEET SAMMI & KARLKarl was very emotional when his third child, Sammi, was born with all of the same unique features as he had being affected by ectodermal dysplasia. He felt guilt, sadness, and worried about Sammi’s future.

Now five, Sammi has hair that is only about three inches long and somewhat sparse due to her condition. As she grows, she defies Karl’s worries and demonstrates her internal strength every day.

Karl and his wife, Nancy, decided to attend the 2015 Family Conference to help Sammi, who desired to have long hair. Initially, it was Karl who had difficulty attending. He had always been private about his condition. But, that soon changed.

T minus 45 minutes till the Talent Show...With 45 minutes left until the Talent Show at the Conference, Sammi announced that she wanted to dance to the song “I See the Light” from “Tangled,” a Disney movie about the princess Rapunzel who has long, magical hair.

Sammi told Karl, “You can be the boy dancer, DaDa.” Karl was not so excited about this prospect. But, he looked into her eyes and saw her desire to make this happen. Karl knew the decision was already made for him.

T minus 30 minutes...Sammi planned to first dance alone on stage. Then, Karl would surprise everyone by jumping on stage to sing his part. He didn’t know any lyrics. But, with lyrics like, “At last I see the light, and it’s like the fog has lifted...”, he quickly realized that this would be “their song.” It was perfect for this moment. It would bring to light his role as a father, husband, and as a person affected by an ectodermal dysplasia.

He broke down in tears many times during their practice. Most of his friends don’t even know about his ectodermal dysplasia. In grade school, he wore dentures. In high school, he wore a wig. Now, he was going to be on stage leaping and spinning in front of a large group!

Soon, it was time. Sammi did her part. Then, Karl jumped on stage, twirling and dancing along with Sammi. He surprised his wife and children. The crowd cheered and cried as they witnessed a celebratory, beautiful, loving moment between a daddy and his daughter.

People thought that Sammi was the shy one. But, it was Karl who was the most emotional. She was his rock! It was one of the best moments he has had with his beautiful daughter.

Karl came to the Conference seeking answers. In the end, this moment with Sammi and the beauty of being surrounded by others facing the same issues made him appreciate the beauty in everyone. He feels…free!

364 VOLUNTEERS

dedicated more than 3,652 hours

1,789 DONORS contributed 2,578 gifts totaling $894,923

28 FAMILIES raised more than

$117,000 through hosted fundraisers *All figures that are listed are unaudited; estimated audit completion is 5/1/2016. Visit nfed.org in June to see our complete audit.

SPECIAL THANKS TO OUR GOLD BENEFACTORS (CORPORATIONS AND FOUNDATIONS $25,000 AND UP)Edimer Pharmaceuticals The Hubbard Broadcasting

FoundationLouis J. and June E. Kay

FoundationStraumann Corporation

*Find our full list of 2015 donors, Board of Directors and staff at nfed.org.

INCOME EXPENSE

$414,985

$24,462

$86,727 $105,800

$171,612

Contributions$666,221

Conference Fees$145,251

Investment Income$83,451

Sales, In-Kind, Misc.$43,169

Support - $414,985Research - $171,612

Treatment - $105,800Fundraising - $86,727

Mgt & General - $24,462

$43,169

$145,251

$83,451

$666,221

ARE AMAZING!

Dear friend,

Sincerely,

Mary Fete, Executive Director

WE ACHIEVED GREAT THINGS BECAUSE OF YOU!

Increase of

22% MORE FAMILIESconnected in 2015 at our National and Regional Family Conferences than in 2014.

540 Total Attended:

307 @ National Conference

233 @ Regional Conferences

Accepted

85% OF

TREATMENTFUNDINGREQUESTS

through the Treatment Assistance Program.

55% dental treatment

27% cooling vests

18% wigs

We supported

2

and sponsored the second Goltz Research Conference in Colorado where 16 families from all around the United States participated.

OUR SUPPORTERS

I am very proud to share the NFED annual report with you. Together, we have had an amazing year. We finished the year financially strong because of your generosity. We are tremendously grateful for your support and kindness and thank you!

Our wonderful Family Conference in the Colorado mountains was a huge highlight. Families had the unique opportunity to learn and support each other; laugh and cry together and develop life-long friendships and support systems. Sammi and Karl’s family story in this report demonstrates how the Conference is truly a remarkable life-changing event for everyone that attends - including staff.

We welcomed 208 new individuals who joined our NFED Family and an increased number of committed people who volunteered for us. Our Treatment and Research Programs continue to thrive. The Mary Kaye Richter Treatment Program funded 12 individuals to help pay for their dentures, wigs or cooling vests. Families made our Goltz Research Conference very successful

in advancing our understanding of how the condition affects growth.

Yet, we had some disappointments and sadness in 2015. The Newborn XLHED Clinical Trial results were not what we had hoped. But, we remain optimistic that the long-term data analysis will be more promising. This only adds to our fuel to find treatments and cures for all of the ectodermal dysplasias.

I continue to believe the most important thing we do is to provide support that families need, whether it’s talking on the phone or giving individuals the opportunity to connect with other families. We are one NFED family supporting each other.

I am grateful for the opportunity to be a part of your amazing organization. Thank you with all of my heart. Enjoy the annual report and stay tuned to follow our progress towards our 2016 goals!

We presented Dr. Frank Farrington with the John E. Gilster D.D.S. Outstanding Service Through Dentistry Award for his 34 years of dedication to our NFED family.

Family fundraiser

“Rally for Ally” has raised

over $23,000 for the NFED.

“I often refer to the NFED as ‘the best little charity there ever was’. The NFED receives no government funding yet they manage to help thousands of families all over the world AND they conduct significant research. I support the NFED because it does so much for me, my family and countless other families. I feel the need to do my part in return.”

- Dee Dee O., New York

RESEARCH PROJECTS

Connections, answered questions and memories made for so many at our conferences in 2015!

Pierce received funding in 2015 for his first set of dentures! Congrats, Pierce!

Jack participated in a research study to see if stem cells help skin conditions. Thanks, Jack!

HELP US GROW! VISIT NFED.ORG TO FIND OUT HOW YOU CAN SUPPORT, GET INVOLVED AND SPREAD THE WORD TODAY!

NameAddress

City State Zip

6 Executive Dr., Ste. 2Fairview Heights, IL 62208-1360618-566-2020www.NFED.orginfo@nfed.org

ANNUAL REPORT2015

THANK YOU for all of your support!

NONPROFIT U.S. POSTAGE

PAID PERMIT NO. 13BELLEVILLE, IL

THE PROOF IS IN THE

PEOPLE

2015 ANNUAL REPORTNational Foundation for Ectodermal Dysplasias