Help Us Put a Face to the Fight: Support Our Family’s Advocacy Trip to DC

For most of my life, I believed I was a mistake.

Messed up. Screwed up. Ugly. A burden.

But I’ve stopped believing those lies.

At age 37, I was diagnosed with a rare genetic condition called Ectodermal Dysplasia—a disease that affects the development of skin, hair, nails, teeth, sweat glands, and more. It explained the symptoms I’ve struggled with since childhood:

Jaw and dental abnormalities

Hair and nail issues

Heat intolerance

Respiratory challenges

Vision problems

I’ve endured over 30 surgeries because of this disease, with 6 more scheduled next year. But the hardest part wasn’t the surgeries—it was the shame. I never spoke about it. I didn’t want anyone to know.

Then everything changed.

Two months after my diagnosis, all three of my children tested positive for the same condition. Suddenly, silence was no longer an option. I refuse to let them grow up believing they are broken. I want them to know they are fearfully and wonderfully made, and that their story matters.

---

️ Why We’re Asking for Help

On November 3rd and 4th, I’ll be flying to Washington, D.C. to speak before Congress in support of the Ensuring Lasting Smiles Act—a bill that would require insurance companies to cover medically necessary surgeries for people with congenital anomalies like ours. Right now, a loophole allows insurers to deny coverage, leaving families like mine to shoulder tens of thousands in medical costs.

The National Foundation for Ectodermal Dysplasia is sponsoring my trip, but it won’t cover all expenses. My husband Mike and I believe it’s incredibly important for our children to come with me—to see their mom stand up and speak out for them, and to put a face to this story.

---

Our Goal: $1,200

Your support will help cover:

Travel and lodging for our family

Meals and transportation in D.C.

Advocacy materials and outreach

We’re asking for help to raise $1,200 to make this possible.

If you can give, thank you from the bottom of our hearts. If you can’t, we completely understand—but you can still be part of our story by writing to your local legislators and asking them to support the Ensuring Lasting Smiles Act.

---

From Our Family to Yours

This isn’t just about us. It’s about every child who deserves to grow up without shame. Every parent who shouldn’t have to fight for basic medical care. Every voice that deserves to be heard.

Thank you for standing with us.

With love and gratitude,

Lindsey, Mike, and our three brave kids

--