By Mary Fete
Here it is November with the holidays just around the corner. For you, I am sure that it has been a busy fall. It is always so hectic getting the kids back to school and/or working on the end of the year work commitments. Fall is rapidly ending (although the weather in the Midwest has been amazingly warm) and we are rapidly heading for winter. For some of us, the snow will soon be falling and icicles will be decorating our roofs.
Future Plans
In September, our staff participated in a two-day staff retreat off-site so we could concentrate on our plans for 2017. It was very productive and we are excited to share all of our 2017 plans with you very soon.
You are already aware of some of these exciting plans, including our advocacy efforts. We developed these plans from your thoughts and input on how we can improve our services and programs. We came back from the retreat excited to build on our efforts to better serve you in the New Year.
If you have suggestions and ideas on how we can improve our services, I would love to hear from you. What are we missing? How can we improve what we do? Please call me at 618-566-2020 or email me. I want to hear from you!
Anniversary Present to You
I hope that you have had an opportunity to check out the new website. It is our labor of love as our 35th-anniversary gift to you. We are very excited and proud of this brand new website. Who knew that launching a new website was so time-consuming and labor and resource intensive? Well, we do now! We listened to your ideas and suggestions and hope that you are as happy as we are with our new virtual home. I would love to hear your feedback.
International Meeting
In October, the international ectodermal dysplasias support group leaders met in Italy. There are 26 members of the international support organizations and nine of them participated in this meeting. It is critical that we are actively involved at the international level to collaborate with our sister organizations across the globe.
We discussed how important it is for us to work together to collaborate on ectodermal dysplasias research and treatment. We specifically discussed the recent studies involving x-linked hypohidrotic ectodermal dysplasia. We, as an international ectodermal dysplasias community, are strongly committed to finding ways to keep this research moving forward. I will keep you apprised of our efforts and I hope to soon have some exciting news to share with you. So stay tuned!
The NFED is strongly committed to finding better treatment options and ultimately cures for all of the ectodermal dysplasias. We continue our efforts and pursue all potential options. I am grateful for all of your support and everything you do to build a stronger community.
I send my love and big hugs to you and your family!