By Mary K. Richter
As I age, the process is taking its toll. My mobility isn’t so good and my memory sometimes escapes me. But there are those memories I will never forget particularly the early families who displayed confidence in what I was trying to do.
The Shimchicks, the Schuermans, the Tanners and a little girl named JoAnna Daniel. (You may know her as JoAnna Nix.) It was JoAnna that taught me the importance of what we were trying to accomplish…an understanding of what the ectodermal dysplasias were and what needed to be done.
Our very first fundraiser was a walk that started in the community park in Mascoutah, the original home of the National Foundation for Ectodermal Dysplasias (NFED). That day, as we were about to begin, a little girl walked up to me with her hands in her pockets. I’m going to guess she was about 6 years old.
I walked up to her and offered my hand which she reluctantly took. She was affected by ectrodactly-ectodermal dysplasias-clefting syndrome, more commonly known as EEC. I told her she had a sweet little hand which made her smile.
One Tough Cookie
JoAnna lived a life giving lots of smiles to those she knew. She was a tenacious fighter when it came to things she loved doing even when the going was tough. In high school, she was a member of the cheerleading team and I’ll simply say she wasn’t treated well.
But she always persevered and taught others about courage, determination and love. She was one tough cookie and taught others by her example.
Today, I learned that JoAnna passed away and the hearts of all who knew her ache. She had fought a valiant fight with throat cancer, which took several ear, nose and throat doctors to discover. She fought hard and had won the battle, with one remaining problem, her throat tissues did not want to heal properly.
JoAnna participated in a dental treatment study in 1991. 
JoAnna’s smile will never be forgotten.
This led to all sorts of issues including narrowing of her airway and difficulties with swallowing. She never gave up just as she did throughout her life. Still, the issues were more than her body could handle.
An Angel
I’ll always remember that little girl and the joy that she brought to so many. She was a mentor to others with the same condition and always talked with confidence and joy. Those of us who knew her learned a lot about life and living and she gave it her very best.
JoAnna befriended Ally Kelso and Sam Day at an NFED Family Conference. 
JoAnna, Zemery Dennis and Norma McDonald
Read JoAnna’s ObituaryNever will there be another angel like JoAnna. I trust she’ll take my hand when we meet again.
Mary K. Richter is the founder of the National Foundation for Ectodermal Dysplasias and served as executive director from 1981-2010.
What an incredible tribute. Joanna was a fighter and such an inspiration to all those with EEC and Ectodermal Dysplasia. She will be missed. Very sorry to hear of her passing. Thanks for sharing Mary Kaye!
You are right, DeAnn, she was a fighter. We definitely will miss her. ~ Jodi, NFED, Director, Marketing and Communications
Mary Kaye Richter is one of the most fantastic ladies I am proud to call her my friend. I enjoyed volunteering for her at her Mascoutah office. God love you, Mary Kaye Richter. What a great article.
Thank you for sharing, Judy. We couldn’t agree with you more. We are grateful for all of your volunteer efforts for the Foundation. ~ Jodi, NFED, Director, Marketing and Communications
Our family is so sad to her of Joanna’s passing. We were blessed to have met her. She will forever be a beautiful role model to our daughter Julia. Thank you for sharing your memories with us.
Hi, Franni. I know, right? It’s incredibly sad. And she was such a sweet role model for your own beautiful daaughter. ~ Jodi, NFED, Director, Marketing and Communications
It warms my heart immensely to see this tribute to JoAnna. The two of us lived miles apart from one another, but, little did she know, that I watched her so vigilantly from afar. JoAnn was a steadying grace for me. Her courage gave me courage. Her strength gave me strength. Her determination gave me determination. She literally gave me the willpower to push through some hard times by reminding me that it’s possible to do so with a smile and gratitude.
She’ll be there at the gate to “take your hand”and give you a tour of her knew home. I’m pretty sure there’ll be a lot of cartwheels and cheers at that reunion. God bless you for all you do and have done Ms. Mary. You already have wings.
I love you Joann. Thank you for everything. CUL8R 🙂 <3
That’s a beautiful tribute to our mutual friend! Be well, ~ Jodi, NFED, Director, Marketing and Communications
Thank you for the tribute and your work in the EEC. In our brief time of knowing one another it became evident that JoAnna was special and is Special!!! While she lived among us she gave us love through her acts of kindness! JoAnna’s spirit, warmth, and smiles will never be forgotten! Thank you JoAnna for living, loving, and giving your best!
Your love, your spirit, and energy lives on and it lives through others you have touched. Love you & Blessings & Prayers to your family and friends!
Thank you for sharing your thoughts on JoAnna. ~ Jodi, NFED, Director, Marketing and Communications
JoAnna was a fantastic lady. She will be sorely missed for her love, her humor and all around beauty and great personality. She was a warrior right up until the final battle. She has her victory in heaven now and I look forward to seeing her again.
We loved her humor, too. Such spunk! ~ Jodi, NFED, Director, Marketing and Communications
What an amazing tribute to JoAnna. She touched the lives of many. I strive to be like her. Thank you for these beautiful words.
You are welcome! Mary Kaye has always have a beautiful way with words. JoAnna truly touched more people than she probably realized. ~ Jodi, NFED, Director, Marketing and Communications
I met Joanna during our orientation for position with the Federal Government. JoAnna was easy listener, compassion, and a true friend. When I struggled with caring for my father during his year long battle with losing his legs. JoAnna alway has kind words and a comforting ears. She was my friend, one of original 3FD members of our training group. JoAnna, Jeanene and myself often met for dinner and to catch-up with each other life’s. JoAnna birthday was 12-7, and mine was 12-02, we often tried to celebrate our birthday together. Even after she became ill, Jeanene and I would often go over to her home to check on our friend. We were known as the 3 Divas. JoAnna, you have gained your wings. I am so glad we met, and I know we see each other again. Rest my friend, You touch so many lives and I thank you. Jeanene and I will miss you. RIp
Thank you for sharing those wonderful memories of JoAnna. We’re glad you had such a wonderful friendship. ~ Jodi, NFED, Director, Marketing and Communications
Rip Joanna, I worked at the domestic violence shelter with her. She was very sweet.
We are sorry for your loss, Amanda. Take care, Jodi, NFED Director, Marketing and Communications
Joanna was a second grader in my class at Summit School in Collinsville, IL. Despite her physical limitations, she had beautiful handwriting and won a penmanship contest that year. She was such a determined young lady. I feel so privileged to have had her as a student.
Hi, Carol. Thank you for sharing that story of JoAnna! We love it. She was the perfect example of someone who never let her differences hold her back. Thank you for being her teacher! ~ Jodi, NFED, Director, Marketing and Communications
Obviously Joanna was an incredible lady my pastor once said what folks say about you after you pass speaks volumes.