More than forty years ago, a group of people came together with a shared goal: to help those with ectodermal dysplasias. Today, the National Foundation for Ectodermal Dysplasias (NFED) is a global leader in supporting and advocating for those affected by ectodermal dysplasias. In 2022, the NFED provided support to nearly 10,000 affected individuals worldwide.
Our mission is to empower and connect people touched by ectodermal dysplasias through education, support and research.
Thanks to your support, 2022 was a year of notable achievements for the NFED!
375
family members and friends volunteered their time and talent as NFED board and council members, family liaisons, social media ambassadors, family fundraiser hosts, guest bloggers and more.
14
Family Fundraisers brought in over $156,595 in support for the NFED.
419
new affected individuals registered with us and joined the NFED family.
1329
unique individuals and organizations gave 2545 financial gifts to the NFED.
299
people from 49 states plus Washington, D.C. attended 94 virtual legislative meetings to advocate for the Ensuring Lasting Smiles Act (ELSA) during October’s Virtual Advocacy Day! The October event was one of three Virtual Advocacy Days held by the NFED in 2022.
$6,000+
was awarded through our Treatment Assistance Program to help families pay for dentures and air conditioning.
2
new Dental Treatment Centers were added to the NFED referral network, bringing us to 26 total providers nationwide. Welcome to: Boston Medical Center and Primary Children’s Hospital/University of Utah.
79
families joined us in St. Louis for our first, in-person Family Conference since 2019, including 22 families who attended conference for the first time.
If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl. But whatever you do, you have to keep moving forward.
Martin Luther King Jr.
Remembering the Past, Looking to the Future
The year 2022 was a bittersweet one for our NFED family. In July, we were able to reconvene with each other at our first, in-person Family Conference since before the COVID pandemic. I treasure the excitement we felt when we were (finally) able to see the faces of old friends and new at this great event. If you haven’t been to an NFED Family Conference, I highly recommend you read our wrap-up blog about the event and try to make it to a future conference, if you can. Our families come together to learn and support each other. And many make life-long friends.
One of my most cherished memories of the 2022 Family Conference is seeing our Founder, Mary K. Richter, reunite with our NFED family. Seeing her joy when talking to children and giving hugs to long-time friends, is a memory I hold dear. Sadly, Mary K. died just months later, on November 24, from cancer. She was a force of nature, whose motherly love and passionate drive made the NFED a reality and led us to where we are today. She is greatly missed. And while we grieve her loss, we march forward and will continue her mission to support the ectodermal dysplasias community.
Throughout 2022, we continued to move forward with the research priorities identified at 2021’s International Research Conference. Multiple work groups continue efforts to help us better understand the ectodermal dysplasias, treatments and potential cures.
We continue to be focused on welcoming every individual affected by ectodermal dysplasia, and their loved ones, into our community — to provide support, connect them to resources and each other, and drive research that will positively affect the lives of our families. Thank you for being a part of the NFED family!
With warm gratitude,
Mary Fete, MSN, R.N., CCM
Executive Director
2022 Highlights
Supporting You. Supporting Each Other.
Reuniting in-person for the first time since 2019 at the 2022 NFED Family Conference, we witnessed first-hand the power of our families connecting with each other. This was the first conference for the Watts family, whose daughter, Katherine, is affected by Goltz Syndrome.
The Watts family had utilized the NFED’s online resources and joined our private Facebook groups to connect with resources and other families, but it was nothing like finding the family of support they did when they joined us at the conference in St. Louis.
It was very overwhelming in the best possible sense…It was wonderful to be able to meet folks and it’s like, ‘Oh my goodness, this is a lot.’ But it was wonderful to not just get to meet the Goltz family but meet the whole [ectodermal dysplasias] family. I wish conference could have been a little longer!
Jodi Watts, Mother of Katherine who is affected by Goltz Syndrome
Katherine’s parents, Jodi and Michael, especially enjoyed the session dedicated to Goltz syndrome. They met with other families who were gracious in telling what has worked for them. And this is the magic of the NFED family. The Watts’ experience is similar to many families who start their journey with us when they find us online after receiving their diagnosis. Wherever you are at in your journey with your or your loved one’s diagnosis, we are here for you. You are not alone!
Advocating for the Ensuring Lasting Smiles Act
On April 4, 2022, the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (ELSA), a bipartisan bill that would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth.
The NFED played a key role in the bill’s development and advocating for its passage, working with lawmakers and other patient advocacy groups to raise awareness of the issue and build support for the bill. This included hosting three virtual advocacy days in 2022, where hundreds of advocates met with their legislators and/or staff about the importance of ELSA. Unfortunately, ELSA was not brought to a vote by the U.S. Senate before the end of the 117th Congress, but we continue to advocate for this life-changing legislation as we await its reintroduction in the current Congress.
When ELSA is passed into law, it would be a victory for the many people with congenital anomalies who have struggled to obtain the medically necessary treatments they need. Without coverage, many people with these conditions are forced to pay out-of-pocket for expensive procedures, which can put a significant financial burden on families. ELSA will make reciving medically necessary treatments more attainable for so many families.
The NFED is proud of its role in the passage of ELSA in the House in 2022. We are grateful to the lawmakers who supported this important bill, and we look forward to working with them to ensure that ELSA becomes law.
Driving Research
Moving Closer to a Treatment
The opening of an EDELIFE clinical trial site at Washington University in St. Louis, Missouri, is a significant milestone for the NFED and the entire ectodermal dysplasias community. This trial is investigating the potential of ER004, a protein replacement therapy, to treat X-linked hypohidrotic ectodermal dysplasia (XLHED), the most common form of ectodermal dysplasias. In prior studies, the potential treatment was shown to restore sweat function in affected baby boys who were treated prior to birth.
The opening of this new trial site is a testament to the hard work and dedication of the NFED and its partners. The NFED has been a leading advocate for research into the ectodermal dysplasias for decades, and its support has been instrumental in making this trial possible.
The opening of the EDELIFE clinical trial site at Washington University is a great example of the progress that is being made in ectodermal dysplasias research. The NFED is proud to support this important work, and we are hopeful that this trial will lead to the approval of the treatment for XLHED and see it become available to all families who want it.
Global Work Groups Continue to Drive Important Research
In 2021, we convened leaders in the medical and scientific community to envision and outline a research initiative for the next several years for the NFED. This work continued to move forward in 2022. Scientists, care providers and patient advocates have been working together in four key areas:
- Registry and Biobank Work Group: The NFED plans to launch a new patient registry and biobank, which will be a database of important genetic and health information for ectodermal dysplasia patients. Patient registries can be a powerful tool for any disease. The registry can track the course of disease, look at various treatment options and evaluate their effectiveness and outcomes. This can be helpful in looking at prognosis, disease outcomes and quality of life.
- Wound Healing Work Group: The group’s discussions have centered on the current barriers to therapy development. These barriers include limited understanding of the nature of the wounds and their normal progression and a lack of access to patient educational materials and treatments. To begin to overcome these barriers, the Work Group has identified two short-term priorities: Natural History Study of Wound Healing and Wound Healing Workshop.
- Prevalence Work Group: The key goal of this Work Group is to evaluate databases and partnerships to establish more accurate and valid prevalence estimates of the more common ectodermal dysplasias.
- Diagnostic Work Group: The key goal of this Work Group is to examine opportunities to establish the diagnosis of an ectodermal dysplasia during pregnancy or as early as possible after birth of an affected individual.
Financials
| DONOR INCOME* | |
| Contributions & Grants | $1,170,684 |
| Special Event Registrations | $86,124 |
| Sales, In-Kind, Misc. | $39,323 |
| Total Donor Income | $1,296,131 |
| Total Operating Expenses | $1,145,570 |
| Net Operating Income | $150,161 |
| NON-DONOR INCOME* | |
| Investment Losses (Realized/Unrealized) | -$622,808 |
| Assets Released from Restrictions | $25,083 |
| Total Non-Donor Income | -$597,725 |
| OPERATING EXPENSES* | ||
| Family Support | $485,406 | |
| Treatment | $262,989 | |
| Research | $196,939 | |
| Fundraising | $183,088 | |
| Management/General | $17,148 | |
| Total Operating Expenses | $1,145,570 |
We Can’t Do It Without YOU!
We can only create awareness, achieve breakthroughs and foster life-changing treatments with your help. Whether you have given financially, volunteered your time, hosted a fundraising event or gave an in-kind gift, we are incredibly grateful.
So from all of us at the National Foundation for Ectodermal Dysplasias, thank you to our incredible supporters!