As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017.
Ectodermal Dysplasia Treatment Videos Now Available
The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.
Launching a Major Research Campaign
We stand at an unprecedented time in history. Preliminary findings from research show great promise for eradicating two symptoms of the most common k ind of ectodermal dysplasia. It’s extraordinary! But without funding, this research study and others will not continue. We are launching the “Impact Cures, Now” campaign to raise $300,000 in the next three years for ectodermal dysplasias research.
Families Educate Medical Professionals
Educating medical professionals about ectodermal dysplasia is an important part of our NFED mission. Families played a critical role by volunteering to share their stories and describe the how the rare condition affects them at a Grand Rounds in Fairfax, Va.
Maximus’ Story with Goltz Syndrome
After a normal pregnancy, Brandi and Corey knew right away that something was wrong when their son, Maximus was born. He had a wound on the top of his head, fused fingers and a missing toe. The nurses were hesitant to wipe off the newborn in fear his skin may slough up. In this interview,…
Pay it forward! Share the Light!
By Dee Dee Olsen I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration. We brought three little people into this world. They breathed new dimensions of love and…
Creating Connections of Hope and Comfort
By Rachel Buerman, NFED Liaison I am a pharmacist and my husband is a special education teacher with a license for both learning disabilities and emotional behavior disorders. For both of us it is important that we are comfortable reading, understanding and analyzing research articles and clinical trials that are published in professional journals. We…
Finding Strength in Moments of Pain
By Acacia Hathaway When my daughter, Ella, is older I will tell her the heart touching story of her first birthday and why I chose butterflies as her theme. She will begin to understand that she was strong from the beginning. She has taught me what strength really is. When Ella was almost a year…