Can you believe it is almost time to say goodbye to another year?
When I look back over 2016, it brings a smile to my face when I see what we, the National Foundation for Ectodermal Dysplasias (NFED) family, have accomplished. We have truly been blessed with a wonderful year. You helped us accomplish many goals. We are truly grateful that each of you are a part of our family.
Expanding Our NFED Community
We know firsthand that there is strength in numbers. Our NFED community continues to grow with new families joining every week and a 41% increase in the number of likes on our Facebook page. Our goal is to provide support and education to every family living with ectodermal dysplasia for generations to come. We have a lot of work to do and we continue to increase our efforts in this area. It takes all of us working together to raise awareness. Social media continues to be pivotal in reaching more families.
A More Engaged NFED Community
- We are grateful to the 85 new volunteers who stepped up in 2016 to help the NFED. These volunteers helped with a range of activities such as specific projects, blog writing, family fundraisers. They also served on planning committees and the Board and helped at Family Conference, new family fundraisers and more.
- The NFED officially became a member of the premier volunteer awards program in the United States. We will track our volunteer’s hours and submit them for eligibility to receive a President’s Volunteer Service Award. We share in the program’s mission to inspire more people to answer the call to service. The awards program also helps us celebrate the impact NFED volunteers are making in the ectodermal dysplasias community, and ultimately the world.
Increase Family’s Access to Dental Care
- To help increase families’ access to quality dental care, we added new Dental Treatment Centers in New Jersey and in New York. We referred 60 people with ectodermal dysplasias to one of our Dental Treatment Centers in 2016.
- Straumann donated dental implants for four affected individuals. We are very grateful for Straumann’s generosity and continue to alert families to the benefits of this great program.
Advancing Ectodermal Dysplasias Research
- We funded a seed grant of $25,000 to Dr. Holm Schneider in Germany to continue the important x-linked hypohidrotic ectodermal dysplasia research we began 30 years ago. As you may know from our announcement earlier this month, Dr. Schneider dosed male twins with XLHED in utero at 26 weeks and again at 30 weeks with EDI200. The early results are very encouraging. Dr. Schneider reports an impressive number of tooth buds were noted after treatment. Also, the twins’ sweat glands appeared to have developed normally and they are doing fine in regulating their temperature. These preliminary findings provide incredible hope after the closing of the XLHED Newborn Clinical Trial.
- We successfully launched our new website in November which offers families a library of educational articles, new resources, tool kits, and easier ways to connect with both the Foundation and other families. I would like to hear what you think of the new website.
Increase Funding for Our Mission
- THANK YOU!
- Our 35th Anniversary Celebration hosted more than 250 people at our conference in St. Louis, Mo. and surpassed our goal by netting over $63,000. Our $10,000 goal for our Send a Kid to Camp was topped by raising over $16,000. These funds are used to help get kids to our Family Conference Kays’ Kids Camp. Currently, we are close to hitting our $100,000 goal for our end-of-the-year campaign. Overall, we will meet our 2016 funding goal. All of this money is used to support our mission and to provide direct services and support to our community. We couldn’t have done this without support from you all. We are very grateful for your support this year!
Looking Forward: 2017 Goals
As the only advocacy organization in the United States dedicated to those living with ectodermal dysplasia, we want to make sure that you always feel supported by and connected to the NFED, now and in the future. We are excited about several new initiatives we will launch in 2017 and the promise they hold for our families.
- The largest complaint we hear from families is their frustration in finding dental care that is accessible and affordable. Through the years, we have mentored them through the insurance claims process, provided modest funding to qualified families and built a growing network of Dental Treatment Centers that offer teams of experienced dentists. Next year, we are thinking bigger. It’s time that we work to change the legislation in all 50 states so that it mandates medical benefits for the dental care of ectodermal dysplasias. We must have the help of families throughout the United States in our battle for change. We will kick off this campaign next summer on Advocacy Day on Capitol Hill on July 19. We are seeking at least 50 people to join us in meeting with legislators and sharing their stories of ectodermal dysplasias. We have enlisted the help of experienced people who will train all families on how to advocate for change. It’s a monumental undertaking that will take us many years to achieve. We must remain patient and passionate to achieve our goal. We need to mobilize our NFED community to action. The time is now and we need your help. Please contact Kelley to see what you can do.
- In conjunction with the Advocacy Day, we are looking to have a banner number of people attend this year’s Family Conference, July 20-22. The Conference continues to be the number one way for families to be educated, to find support and to connect with doctors and dentists who are experienced with ectodermal dysplasias.
- In addition to attending Conference in our nation’s capital, families have the opportunity to participate in a research project at the National Institute of Dental and Craniofacial Research. The study will look at the various oral manifestations and salivary function of ectodermal dysplasias.
- We are strongly committed to the continued XLHED/EDI200 research and will continue to support Dr. Holm Schneider in 2017.
- For nearly a decade, a team of experts from around the world we convened have been meeting to create a new classification system for the ectodermal dysplasias. What does that mean? Our hope is that a new classification system will improve early diagnosis, help identify appropriate treatment and incite research.
- You can help us spread the word by sharing our posts, especially during Ectodermal Dysplasias Awareness Month in February and inviting your friends and family to sign up for our newsletter. It’s up to us to tell the world about ectodermal dysplasias and the inspiring families it affects.
- With the New Year and the work ahead, we offer you numerous opportunities to get involved. Consider sharing your story, participating in Advocacy Day, attending a Family Conference, hosting a family fundraiser, connecting with other families, or hosting a social event at your home for local families.
- Our goal is to increase funding by 10%. As you read above, we have lots of plans for 2017 and all of this takes a lot of financial resources.
In all that we do, our first priority remains to serve you, our members. We remain dedicated to ensuring that all of our families become empowered through education, support, and research.
We are here, supporting you, supporting each other.