How The Stand Together Conference is Unique This Year

March 19, 2024March 19, 2024 Category: News Posted by Mary Fete

We are changing things up in 2024! The Stand Together Advocacy Conference will be a bit different than Family Conferences or Advocacy Days on Capitol Hill of the past. This year’s event will be July 7-9 in Washington, D.C.

Mary Fete stands with her arms around four boys affected by ectodermal dysplasia. She invites families to attend the Stand Together Conference. — *Your kids and teens will have fun meeting other children who are affected by ectodermal dysplasias in Kays’ Kids Camp and Teen Program. Siblings will enjoy it, too!*

We are not only including our National Foundation for Ectodermal Dysplasias (NFED) families but we are inviting groups that support other congenital anomalies to join us. This is because the Ensuring Lasting Smiles Act (ELSA) will benefit as many congenital anomalies as possible, not just ectodermal dysplasias. Standing together on Capitol Hill, our rare voices are stronger!

Advocating is More Than ELSA

A man in a blue shirt speaks into a microphone in front of people sitting in chairs in front of him. There's a screen behind him. — *You will have the opportunity to share your experience and learn from others who have “been there, done that”.*

During our time together, we’ll not only amplify our voices within the halls of Congress but also equip ourselves with the tools and strategies needed to extend our advocacy far beyond D.C. We’ll delve into discussions on how to bring the spirit of advocacy back to our schools, igniting conversations with classmates and educators, and fostering environments where awareness and action thrive.

Leading Your Treatment Journey

In the sessions on day one, you will learn how to find the best providers to manage your treatment and how to better understand the multiple treatment plan options you have. How do you pick a dentist or doctor with confidence? What questions should you ask your care team to get the information you need to make an informed decision? Leave with tips to confidently answer those questions for you and your family.

Your Mental Health Matters

*You don’t want to miss Dr. Marik’s sessions on emotional health.*

Good mental health is key to our overall health and well-being. Learn how to navigate tough situations like bullying, feeling down and other mental health challenges. You will identify strategies to help you cope with daily stress, succeed at work or school and recover from difficult situations. We want you to be your best self! The NFED’s expert, Dr. Patricia Marik, will lead these important discussions both in our adult sessions and in Kays’ Kids Camp and Teen Program.

Dr. Marik will also provide tools you can use to advocate for your child in school and for your children to advocate for themselves. How can you get what your student needs in the school system? How can you educate teachers, coaches and other students? Dr. Marik will explain options and invite families to share what’s worked successfully for them.

Towards the end of day one, you will receive training on how to advocate on Capitol Hill and share your ectodermal dysplasia story. Then, we will all relax, have dinner, get to know each other and share experiences.

Telling Your Ectodermal Dysplasia Story

NFED advocates stand on the steps of the U.S. Capitol Building. All are wearing matching blue shirts.

Ten ELSA advocates are posed with a staffer in a Congressional office.

Day 2: Here we go! We will gather on Capitol Hill with our matching shirts and continue our efforts to get the ELSA passed. There’s something truly magical every time our ELSA family stands on the steps of the U.S. Capitol building for a group photo, energized and ready to create change.

You will spend the entire day meeting with legislators. Never done this before? We got you covered! You will get detailed training.

Senator Tammy Baldwin stand with numerous children and teens who are advocating for the Ensuring Lasting Smiles Act.

Two women smiling and wearing sunglasses stand on the steps of the U.S. Capitol with other advocates in the background.

Plus, you will not be alone. You will meet with legislative offices with a group and an assigned leader. We have some real pros in our community that will lead the way!

But, That’s Not All at the Stand Together Conference…

Three young girls affected by ectodermal dysplasia and have blonde hair have their arms around each other.

Two men affected by ectodermal dysplasia who are bald stand side by side.

There will also be plenty of time for fun and socialization. This is the best part! You will reunite with old friends and welcome newcomers of all ages to the NFED family. Whether you’re an experienced advocate or just starting out, we’ll make sure you feel confident in sharing what matters to you!

Standing together, we will shape a brighter future for you and for all families living with congenital anomalies!

Register for Stand Together Conference

Don’t wait! Register for the Stand Together Advocacy Conference today. You can also apply for a travel stipend and waived registration fees before April 1, 2024.

Are you planning a vacation around your trip to D.C? Check out our list of “Must See in D.C.”

3 comments on “How The Stand Together Conference is Unique This Year”

Jenny on March 20, 2024

Is this an event that I’m invited to
? Please informed me more details of if you can give me a call I’ll appreciate it thank
You 🙏

2
Kelley Atchison on March 21, 2024

A member of our staff will contact you to share more information on the Stand Together Advocacy Conference.

Luci Capo Rome on April 7, 2024

ELSA is so important to me and I want this bill to be passed for me and so many others. I want the general public to know that the care of cleft lip and palate is a lifelong priority for our functionality and our self esteem.
I look forward to joining Becky and many advocates in DC in July!