The autumn days are getting shorter and the air cooler where I live in the United States, signs that winter isn’t too far off. My husband, Tim, and I are making lots of plans to spend the upcoming holidays with our children and grandchildren who are spread out around the country. We are looking forward to these last few weeks of 2022, despite their busyness.
This week, we celebrate Thanksgiving. On my daily walks, I’ve been thinking about this year and how much we truly have to be grateful for as an ectodermal dysplasias community. Having gratitude can really shift our perspective on life and help us feel hopeful. I know it does for me. Join me as I look back on 2022 and just a few of the wonderful things that took place at the National Foundation for Ectodermal Dysplasias (NFED).
Celebrating 40 Years as an NFED Family
It’s been wonderful to have spent this year reflecting on the last four decades as a Foundation. We enjoyed reminiscing with NFED founder, Mary Kaye Richter, in a series of blogs about the early days and the extraordinary accomplishments that a small-but-mighty foundation like ours has made. And who can forget that fun night in July when NFED families, care providers, friends, volunteers and staff came together for our 40th Anniversary Celebration? Friends hugged and laughed, so happy to be together again. We bestowed awards to individuals who stepped up for our mission in a special way. And, then there was the dancing! Gosh, it was fun to see so much happiness and love. I can still feel those positive feelings today, months later. My heart is filled with gratitude for every person in the past 40 years who has been a part of our NFED family.
The Ensuring Lasting Smiles Act Passes in the U.S. House of Representatives
I’ll never forget the emotional night of April 4. We watched online as the U.S. House of Representatives voted on the Ensuring Lasting Smiles Act (ELSA) (H.R.1916). The number of “yes” votes kept ticking up until it was 310 for and just 110 against. We yelled and cried with joy as the bill passed! I appreciated every advocate from the last five years who accepted our invitation to create change by telling their story. Your tenacity is exactly what we need to clear the next hurdle: getting the U.S. Senate to approve the bill with just weeks left in the year do it. I have no doubt that we can do this.
Family Conference Returns
It’s hard to describe the magic that takes place when families affected by ectodermal dysplasias gather in-person at a Family Conference. But, it’s palatable. We’re proud of the webinars and virtual Kids Camp that we developed for you when in-person meetings simply weren’t possible the last few years. But, being together in St. Louis reminded us how important it is to have these three days to learn from each other. Your kids have grown! The hugs and smiles were too many to count. Families created support networks with their new friends. The compassionate doctors volunteered their expertise to help you better understand the conditions and answer your questions. I am grateful that we found a way to gather safely once again.
The EDELIFE Clinical Trial for X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED)
I can’t think of something that better illustrates our impact on research than having the first, potential treatment for XLHED being tested in a clinical trial this year. Several male babies affected by XLHED, who previously received the treatment prenatally, are sweating normally and have other improved symptoms. The NFED began and led the formative research that brought us to this moment. I am grateful that we stayed the course, never blinking when the science hit bumps in the road. Families can participate at any of several sites across the world, including the location in St. Louis, Missouri, which opened in July of this year. We appreciate the families who volunteered in the last four decades for countless research projects to deepen our understanding and create a truly life-changing treatment. And to the brilliant scientists who advanced the science and the funders who have supported it, I am eternally grateful.
Grateful for You
These are just the highlights. Each day at the NFED gives us reasons to be grateful: the connection with a family; the child who collected and donated change; or another person made aware of these rare conditions.
No matter where you live or what traditions you celebrate, I hope that you will be taking some time in the upcoming weeks to enjoy the people you love. At the NFED, the office will close the week between Christmas and New Year’s to give our staff some time to be with their families. Until then, our crew is here to answer your calls, provide support and push full steam ahead on getting ELSA passed into law.
Please know how grateful I am to have you be a part of the NFED family. It’s my honor to serve as your director. It’s a testament to our entire community that after 40 years, this Foundation stands strong as a respite for everyone affected by ectodermal dysplasias.