Animals for Ava: Paying it forward!

By Angela and Dante Puorro

angela Puorro

Dante Sr, Ava, Angela and Dante Jr. missing is the latest addition to the family in 2015, a little boy!


Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months.  She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was 6 years ago, at 3 o’clock in the afternoon on the Friday before Labor Day.  Ava’s pediatric dentist introduced us to the term “ectodermal  dysplasia”.  The dentist told me to go home and call her pediatrician immediately to get more information while she did her own research.  I did just that.

The pediatrician’s office wanted nothing to do with me.  They dismissed me by saying that what I needed was a consultation and that the doctors already left for the long weekend.  I begged the woman on the phone to just have one of the doctors call me and discuss what was going on with our daughter. She told me that wasn’t what I needed and proceeded to try and set up an appointment for the following Tuesday.

Feeling helpless, desperate and mentally drained, I hung up and Googled the term. It was a horrifying moment in our lives.  To hear your child isn’t “perfect” is heart wrenching and then to top it off, the internet listed ALL of the problems associated with ectodermal dysplasias. That was the moment when everything went blurry.  “Oh my God, is our child going to go deaf…blind…? ” We had a dentist who didn’t have any information, and a pediatrician who wouldn’t even give us a call back.


Within further internet research, we found The National Foundation for Ectodermal Dysplasias.  We immediately reached out and contacted them on the website.  A liaison called us back in 15 minutes!  She put our minds at ease with great information and had much knowledge on the genetic disorders.  She then told us her story.  That was the moment we realized we had a new family to turn to.

As we continued on our journey with our daughter we were made aware of the lack of insurance cooperation.  The cost of her dentures was offensive.  Insurance would not cover them at all.  We sent them x-rays, letters from the dentist explaining her disorder, blood work confirming the genetic disorder.  You name it, we did it.  Still not a penny is paid by our insurance.  We were informed that if our child’s teeth were rotting and needed to be pulled, then and only then would they cover her dentures.

That was when my husband and I decided we needed to do something about it.  We are very blessed that we are able to provide dentures for our daughter but what about other families?  The thought of anyone going through life without necessities like dentures all because insurance is failing them, was extremely difficult to swallow.

Nicole and Ava

Ava and her NFED buddy Nicole having an awesome time at the 2015 Animals for Ava

We hold the fundraiser “Animals for Ava” to give back to the NFED.  Everything they have done for our family is genuine.  Now it is our turn to pay it forward.  From the bottom of our hearts, thank you NFED.

Editor’s Note:  Are you interested in hosting a fundraiser to benefit the NFED? Contact Seth Ferris, NFED Family Fundraising Coordinator, at or call the office at NFED 618-566-2020 to start planning your fundraiser. You can also learn more on our website .

You May Also Like:

Celebrating 15 Years of Halloween Bash Success

The Choice is Obvious, Because I Can!

The True Meaning of Life



Celebrating 15 Years of Halloween Bash Success

Ruth and Ryan Geismar

Ruth and Ryan Geismar

When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan.  Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash.

We would like to say how thankful we are to the Geismars, the Committee Members and everyone involved.  This year we raised approximately $100,000.  Over the past 15 years we have been blessed by the outpouring of generosity with the raising of 3.8 million dollars.

The money raised by this fundraiser allows the NFED to host medical conferences, provide patient support, and fund research.  This research has led to the identification of specific genes responsible for a various forms of ectodermal dysplasia.

The NFED is proud to report some significant strides in research:

  • Ten babies have now been treated with EDI200, a replacement protein for EDA, a protein important in the development of hair, teeth, and exocrine glands (e.g., sweat and salivary glands).  We now await the results from this clinical trial which tested the effectiveness of a replacement protein, EDI200, in newborn boys affected by x-linked hypohidrotic ectodermal dysplasia with the mutation.
  • Maranke Koster, a researcher at the University of Colorado, continues her work with p63 conditions and is making significant advancements in her research for anykyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome (the syndrome that affects Ryan Geismar and many others).  Dr. Koster is working to grow healthy skin from stem cells to help the severe skin erosion characteristic of AEC (?).  Her research lab has learned that these skin erosions also affect individuals affected by another form of ectodermal dysplasia that is caused by the p63 gene called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome.  Her work is the first step towards developing treatments for babies suffering from skin erosion.  This progress for AEC has come in the last 15 years as a direct result from the Halloween Bash – and you!

The Halloween Bash has also helped fund our Treatment  Assistance Program, which provides financial assistance for families unable to afford dental treatment, wigs, or air conditioners.  Now, everyone with ectodermal dysplasias can smile brightly.


The Halloween Bash Committee

We especially thank our amazing committee who has helped us each year. Their efforts are paying off as we watch the research make great strides toward increased understanding and improved treatments.

We are so grateful to all our supporters, our silent auction donors and our friends and family for their continued support.  Thank you for believing in our cause to give back and to make life better for all NFED families.


Alice, Keith, Ruth, Bruce and Ryan Geismar

And foremost, we thank Ruth and Keith Geismar and Alice and Bruce Geismar for their dedication, leadership and generosity. They have been the driving force behind the Bash and we credit them for its success.

There is still time to participate. You can make a donation  or outright purchase one of our items in our Second Chance Auction.

Let’s continue to create smiles together!

Career Reflections – Tyler Brown

An interview with Tyler Brown, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who is an aerial lineman.

I’m an aerial lineman for Haverfield Aviation based out of Gettysburg PA. I travel all over the country working on high voltage power lines from a helicopter. Aerial lineman work from a platform attached to a helicopter, or get dropped off on the tower from either the skid of the helicopter or a 75-100 foot long rope attached to the bottom of the helicopter.

This truly is an amazing career. I am learning everyday and loving what I do. I would have never thought I could enjoy my work as much as I do. I am very blessed to have this opportunity.


Tyler has no fear of heights!

Has having ectodermal dysplasia affected your career choices?

At first, I honestly did think it would really affect my career choice, with my missing fingers being the most notable (Tyler is missing two fingers on his right hand).

After I finished high school, I began my career as a nursing student. I was able to give injections with my right and left hand and had no complications doing anything at all. I was in that field for around three years, until I realized that I wasn’t enjoying it anymore. It wasn’t making me as happy as I thought it would. I thought that being in the hospital so much growing up that perhaps being on the opposite end of the spectrum would bring me joy that nurses have given me throughout the years. The reality was, it wasn’t the career for me.

It wasn’t until my lineman school physical that I was told I might not be able to do something. The doctor didn’t clear me to go to school. So me being me, I left there and went to another physician who simply asked me if my hand stopped me from doing anything. I said no, and went off to lineman school.

Have you needed to request special accommodations in order to do your job?

Absolutely not. About the only thing I have to deal with is having extra fingers on my work gloves. On my own, or with the help of coworkers I cut the extra fingers off and sew them or use a zip tie to close the hole.


Just another day at the office for Tyler

How open are you? Do you tell people about your syndrome at all?

I’m very open about my syndrome as I believe the more people that know the less questions they have and the quicker we can move onto not staring at my hand or cleft lip scar, or whatever catches their attention.

image1 (1)

Editors Note:

Tyler Brown is a thrill-seeker outside of work too! His favorite hobbies are whitewater kayaking, surfing and skiing. He is planning to get his skydiving license soon.

Do you have a career story you’d like to share? Contact Heather McKelvie at

Other Posts You May Enjoy 

Career Reflections – Terri Andrews

NFED Class of 2015 – We Are So Proud!

Ectodermal Dysplasias in the Workplace

When Life throws you a Lemon, make Lemonade!

By Henry and Catherine Bourgin

Catherine Bourgin VA

Catherine Bourgin, Henry’s Mom

Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA.

Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break:

“When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations. The way we have signs set up is we paint boxes and put stones or some bricks in them (to weigh them down from the breezes by the cars passing by).

Sometimes we just get waves of people coming. Some just stop by to donate or to have a conversation. The best part about the lemonade stand is we get to meet a lot of new people and we have fun doing it.

The days we have our lemonade stand were nice, not too hot or cold. We bake lemon bars, brownies, sugar cookies.  We stay outside for 4 hours.

When we are all done, we drink and eat what’s left or save it for another day.  We also invite our neighbors to the lemonade stand. The best part about the lemonade stand is we get to help people like giving them something to drink and donating money for kids who need a new smile.”

Lemonade Stand

Thoughts from Henry’s mom, Catherine:

The lemonade stand is a classic and we started with that fundraising effort as an introduction for my kids. We try to keep it simple and delicious. We bake just three types of treats: brownies, lemon bars and sugar cookies.

It’s imperative to keep the lemonade cold so we bring a cooler, which sits in the red wagon, with ice blocks and keep the pitchers in the cooler the entire time. We bring folding chairs and a small card table with table cloth. The signs are made out of boxes to get the two sided advertising for two way traffic. Sometimes we use balloons. We live on a quiet street that is a loop so there’s only neighborhood traffic.

We decided to set up our lemonade stand on the main road in order to have visibility for customers and we sit under two shade trees to keep cool.  A day or two in advance I write up and distribute a flyer to all the houses on our street (about 50) as another effort to bring awareness and drum up business.

And I post on FB for local friends about our lemonade stand. Both drinks and treats are 50 cents each.  Then we sit and wait and hope and wonder how this year’s efforts will turn out. As Henry mentioned, we have a great time meeting not only our very supportive neighbors but all kinds of folks who stop by from all over.


We’ve had a FedEx delivery guy stop saying he didn’t want anything but only had 40 cents to donate and zoomed off. We had a son who called his dad who was out bicycling to tell his dad to head in our direction. The dad then called his wife who was bicycling from another direction to tell her to meet him at our stand.

As parents, they always supported their kids’ lemonade stand and now as their kids are grown they like to support other kids’ lemonade stand efforts. We had some very nice cleaning ladies stop by for drinks and treats and then upon learning about Henry’s HED formed a prayer circle with us to pray.

We met a dentist’s wife who stopped by and shared that her husband was treating someone with HED. We’ve had a truck load of lawn care workers stop and order eight cups of lemonade as they made their way to the next assignment. With a large order like that, we threw in some cookies to show appreciation.

Quite often, after folks learn about the NFED and HED, a conversation starts and we often end up talking about all kinds of things. Others are happy to make a brief stop for a sweet treat and to help with a donation. With each cup of lemonade, we try to provide friendly service with delicious value and thank them for taking time out of their busy day to stop and see us.

As we serve them, we tell them we are supporting the NFED and other kids who need a smile, just like Henry. When we are done, we pack up our little red wagon and head back to our circle, all abuzz about the folks we saw and spoke with. We are always amazed by their generosity and willingness to help in some way  as well as their interest and concern about ectodermal dysplasias and well-wishes for Henry and others. Sometimes we think of doing something else as fundraiser but so far we keep returning to the fun of the lemonade stand.

Heart I 2015

We sincerely hope our efforts do help the NFED get needed funds to those who are desperate to get some dental work done who otherwise would not be able to. We realize our efforts are just a drop in the bucket towards the overall total cost but we do hope it helps. It makes such a big difference in a person’s life not only to have a glistening, white smile but to be able to speak clearly with confidence.

Editor’s Note:  Are you interested in hosting a fundraiser to benefit the NFED? Contact Seth Ferris, NFED Family Fundraising Coordinator, at or call the office at NFED 618-566-2020 to start planning your fundraiser. You can also learn more on our website .

You may also like: 

Pay it forward! Share the Light!

How Could I Make a Difference?

Fulfilled by Fundraising for our NFED Family

Pay it forward! Share the Light!

By Dee Dee Olsen

Olsens 2014

The Olsen Family in Washington DC in 2014

I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration.  We brought three little people into this world. They breathed new dimensions of love and life and beauty into my existence. I’m sure many of you can say very much the same exact thing.

DeeDee & Jade & Katrina

NFED Family Conference in Colorado Springs, CO in 2015

I have been over a great number of bumps and through quite a few valleys as well. I also went through a time in my life when I was afraid. I’m not describing the fear that comes from a bump in the night. I mean petrified to the point of being sick to your stomach.  A fear so powerful you feel yourself losing proper perspective of the actual size of yourself. Fear that makes you feel tiny and alone and dark. The type of fear that only accompanies the horrors of possibly losing a child.

I’m extremely fortunate that that fear was very short lived. I did not lose my little baby girl.  She was diagnosed as having Goltz syndrome, one of the ectodermal dysplasias.  She was going to be ok. She was not going to die; but I didn’t know that in that moment.  There was no greater scare in my entire life. Nothing that has ever even come remotely close. It was a darkness I will never forget.

Jade & Karina Olsen

Jade & Karina (Sister) at the NFED Family Conference in Richmond, VA in 2009

There have been countless references and quotes even as far back as in the Bible that describe the contradictory yet essential nature between light and darkness. My darkest moments being those when I was afraid for our precious daughter, Jade. The light in this dark period came in the form of the NFED.  I sobbed right through my very first Family Conference. I was so overwhelmed with joy and relief and swells of emotion.

DeeDee and Jade & Friends

NFED Family Conference 2014 in Columbus, OH

I have met so many families at the NFED Family Conference. So many happy children. So many courageous mommies. So many strong dads. I met Miss Mary Kaye Richter, our fearless leader.  And a dedicated, loving staff and advisory council that committed their lives to changing the lives of the families they served. I found it hard to believe that such an organization existed. An entire community! In fact, another family.

I volunteer my time and I raise funds because I want to be part of that light. I want to share that goodness with others. Whether I serve as a Family Liaison for the NFED, or host an event to raise funds or simply sit behind a desk at family conference and sell tee shirts. I want to do my part.

I want to try and pay back the good that was given to me in my darkest hour.  If you have ever been touched by the NFED, I implore you to pay it forward. To do unto others what has been done for you.  In any way big or small. Pay it forward. Share the light.

Editor’s Note:  Would you like to volunteer with the NFED? Email Lea Richardson, NFED manager, community engagement, at or call her at 618-566-6871. You can also learn more about volunteering on our website .

You may also like:

Sweat It Out: The Duke Family’s Journey

EEC Chick at Work

Volunteering for the NFED is My Opportunity to Give Back