Gina Quintanar was a National Foundation for Ectodermal Dysplasias’ (NFED) mom and volunteer whose big heart touched so many lives. We are saddened to share that Gina died last month at the age of 60.

Luis and Gina

Gina and her husband, Luis, first found the NFED in 1999 when they were looking for resources to help their six-month-old son, Alex, who is affected by hypohidrotic ectodermal dysplasia (HED).

Fast forward 10 years to when the threesome and daughter, Tessie, arrived at their first Family Conference in Colorado Springs filled with questions and excitement. Gina recalled that experience in a letter to the NFED.

“…I think about my family’s first conference. I was so excited because I knew what it would mean for Alex. For the first time, he would meet and get to know people who were as he put it, ‘just like me.’ I remember the love and acceptance I felt at the door.”

Gina’s outgoing personality meant she never met a stranger. It wasn’t long before she had befriended the NFED staff and many families.

A Second Mother

The Quintanars left that first conference with hope, and Gina left with a determination to give back to the NFED family, which had given so much to her family. For the next decade, Gina actively volunteered for the Foundation in many ways.

In 2012, she began serving as a Family Liaison for Southern California and Hawaii.

Kelley Atchison from the NFED staff leads the Family Liaison Program and got to work closely with Gina.

“Gina served as a Family Liaison for many years,” Kelley said. “She welcomed any family with open arms and a loving heart. Gina always offered motherly advice. She was fun and funny and always volunteered to help when needed.”

Gina made this custom card to educate strangers.

One of the tips that Gina shared with families was a business card she had made for Alex. When he was little, he or his parents would hand out the card if someone was staring at him. It was a way to educate people and empower Alex.

Gina shared laughs with friends, Rachel Buerman, Shay Eiler and Shay’s son, Zavier at the 2014 Family Conference in Columbus, Ohio.

Gina talked with and mentored many families on their ectodermal dysplasias journeys. Shay Eiler is one of the moms she helped.

There aren’t words to express how sad my heart is. Gina Q was the best ‘adopted mom’ any girl could ever ask for. We met so many years ago when the triplets were just infants and became instant family. There are not enough words in this world to describe this amazing woman and how much she meant to so many. She touched everyone’s lives she came in to contact with. We have shared so many laughs, tears, vacations and memories. I will love you always, Gina.

– Shay Eiler

Chance Auction Queen

For several years, the Quintanars became regulars at the Family Conference. Gina looked out for other parents, made them feel welcome and gave them hope. Always wanting to help, Gina and her family often chaired the chance auction at the Conferences. She organized and worked the fundraiser.

Gina explained why she volunteered in a blog she wrote called, “How Could I Make a Difference.”

“When the idea of fundraising came up, I jumped on it because I wanted to give back to an organization who has given so much to my son and to my family. I always thought, I would if I could, but my husband and I don’t make much money so I didn’t have the money to donate. So what could I do, how could I make a difference? I chose to make a difference by becoming a Family Liaison so I could be that supportive listening ear for someone else and running the chance auction at the Family Conference to raise a little money along the way.”

Heart Felt Gratitude

Gina also went out of her way to express gratitude. After the 2012 Family Conference, Gina solicited families to write thank you letters to the staff and turned them into a beautiful scrapbook that we treasure. For Jodi Edgar Reinhardt’s 20th anniversary on the NFED staff, Gina surprised her by having 20 kids and young adults with ectodermal dysplasia stand up at the Conference and express their gratitude.

Mary Fete, NFED executive director, expressed the sadness the staff is feeling.

“We sure are going to miss Gina! She was a volunteer whom we could always count on. Her ever present smile and caring heart made her such a joy to be around at Family Conferences. We will always remember Gina and think of her with love every time we work on the Family Conference, especially during the chance auction. It was her favorite thing to do!”

Gina lived for her family. Here they are at the 2017 Family Conference. Pictured left to right are Tessie, Aria, Gina, Luis and Alex.

Our thoughts and gratitude go out to Luis, Alex, Tessie and granddaughter, Aria, for sharing their mom and grandma with us for all of these years. She was incredibly proud of Alex, now a college student, and the young man he had become.

For all she did for us, thank you, Gina!

Did Gina touch your life? Share with us in the comments below.


Read more stories about Gina:

The Best He Can Be

How Could I Make a Difference

Would you like to become more involved like Gina was? Explore volunteer opportunities.

4 comments on “Gina Served With a Big Heart”

  1. 1
    Mary K Richter on October 26, 2021

    Gina was one in a million. She cared deeply but unlike others she put that caring to work. Few gave more in time or action than Gina. To say she will be missed is putting it mildly. I simply can’t imagine a family conference without Gina right in the middle. She was humble but lived large in the NFED family. The only gratifying notion is that she rests happily in God’s arms.

  2. 2
    Jennifer Hagerty on October 26, 2021

    Gina, Louie, Alex, Tesse, and Aria were like extended family to us from day one. She would call me about medical questions and I would call her for Mom advice. She was a perfect example of that old saying, “Be who you needed.”

    When Gina met a new family she embraced them with her whole heart and welcomed them unconditionally. Her support and encouragement helped all of us get through some of the most challenging struggles. It was never about what someone else could do for it rather what she could give back or pay forward to another.

    So in true Gina Q fashion I will leave you with a quote:

    Remember to live your life to express, not to impress, don’t strive to make your presence noticed, just make your absence felt. – Lichtenstein”

    Gina’s absence will be felt through and through.

  3. 3
    Terri Grant Matus on October 28, 2021

    I remember meeting Gina at the conference in Colorado. Her beaming smile, and open arms warmed every person she met. We shared many laughs, conversations, (mostly about education and “schools”) and she could always be counted on to lend a helping hand at each conference. Whether she was handing out t shirts, or organizing the Chance auctions, her heartfelt dedication to the NFED was evident. I am saddened to learn that Gina has left this earthly world, but I am grateful that I got to know her and her family. My love and prayers go out to Luis and the “kids”….God keep you all close.

  4. 4
    ELANNE CARLA MEDEIROS DA SILVA on October 29, 2021

    Gina was such an incredible person with so much love to give. I met her during a family conference and she was always a hug I longed for. My heart is broken. Gina was, as it was said, a mama we had every time we met. Always with words of hope and love. Eu não tenho palavras para descrever a dor que senti no coração e o choro instantâneo de quem não quer acreditar no que está lendo. From so far away, we always will love you and remember you.

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