Xtraordinary Individuals

Please visit page 1 to learn more or to nominate your xtraordinary individual.

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Nancy Bukovac and Michael Clark, individually, with Tiger.
Nancy Bukovac & Michael Clark

Nancy Bukovac and Michael Clark were nominated by Max’s mom, Gretchen Slusser

What makes Nancy and Michael Xtraordinary to you?

Nancy and Michael have been the most amazing, supportive, adventurous friends Max could ever have! From beach excursions to the regular “visiting friends houses” their days are never dull! The love and understanding they have for Max is a gift that keeps giving! Our world is better with them in it!

—Gretchen Slusser

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Ashley Carrigan

Ashley Carrigan was nominated by Jaleesa Holden, the mother of her BCBA* client Tiger

What makes Ashley Xtraordinary to you?

Ashley Carrigan is an Xtraordinary individual. She takes the time to continuously apply the available resources from the NFXF website to modify my son Tiger’s programming to fit his needs developmentally and regarding FXS. Previous providers would only defer to me as the “expert” on FXS. And fail to conduct research that would further tailor Tiger’s plan of care to him as an individual.

Ashley has always made the collaboration between the two of us easy. Ashley is an Xtraordinary individual because she did not let her unfamiliarity with FXS stop her from growing her knowledge on the condition. Her continuation to learn more about FXS has provided our family with the best care. I am excited to have Ashley as a part of the FX community. Ashley, you are Xtraordinary!

—Jaleesa Holden

*Board Certified Behavior Analyst.

Toddler Paxton sitting on a step and wearing shorts, a plaid shirt, and a baseball cap on backwards; holding a pair of sunglasses and and huge smile.
Paxton

Paxton was nominated by his mom, Kayla Anderbery

What makes Paxton Xtraordinary to you?

Paxton is the sweetest little man! He make us proud everyday by overcoming obstacles and having the most contagious smile and laugh. He makes every day better just by being a part of it! We couldn’t ask for a sweeter little man to love!

—Kayla Anderbery

Caragan Raska wearing a Rangers jersey and standing next to a huge 3-foot baseball.
Caragan Raska

Caragan Raska was nominated by her mom, Emily Raska

What makes Caragan Xtraordinary to you?

My daughter, Caragan, is Xtraordinary because she is an amazingly happy, joyful, fun, and sports-loving young lady! She is a great friend to many, has an outgoing personality, loves her family, and her dog, Piper, and loves Jesus!

—Emily Raska

Annie Ruth wearing a dress covered in clouds and rainbows, having a big beautiful laugh.
Annie Ruth Sankey

Annie Ruth Sankey was nominated by her mom, Jennie Sankey

What makes Annie Ruth Xtraordinary to you?

That we know of, eight members of my extended family are either premutation carriers or have Fragile X syndrome. None of us would know if it were not for Annie Ruth. Through prenatal screening through my pregnancy with Annie, we accidentally uncovered Fragile X in our family, and have unlocked a whole world of questions, answers, therapies, and challenging decisions. But in the midst of all this, Annie is, as one of her preschool teachers says, “a literal ray of sunshine” dishing out smiles and giggles everywhere we go. I like to say that her essence is rainbows and sunshine, and she dresses accordingly. Her curiosity and growth delight us every day, and she makes all of our lives Xtraordinary!

—Jennie Sankey

Jordan Dupuis, laughing and wearing a green t-shirt that reads WHO NEEDS LUCK ... I HAVE CHARM.
Jordan Dupuis

Jordan Dupuis was nominated by his mom, Jennifer Dupuis

What makes Jordan Xtraordinary to you?

Jordan is a 15-year-old young man with so much personality and laughter! He loves all things to do with the ocean and sea life. His favorite is the humpback whale. Jordan brings us so much joy everyday, he is truly Xtraordinary!

—Jennifer Dupuis

Gwynnie on a pink stage with angel backdrop and wearing a pink tutu, tights, and ballet shoes.
Gwynnie

Gwynnie was nominated by her mom, Kathryn Merrill

What makes Gwynnie Xtraordinary to you?

Gwynnie is brave, strong, kind & oh so joyful! Her smile lights up a whole room. She is so sweet and social … she loves her big brother more than anything. She is a huge gift from God and we would never want to be any different. She is Xtraordinary!

—Kathryn Merrill

The Weiss Family (Kim, Steve, Tenzin and Elliot) on skis standing on a mountain slope.
Weiss Family — Kim, Steve, Tenzin & Elliot

The Weiss family was nominated by Kim’s sister, Michelle Dueck

What makes the Weiss family Xtraordinary to you?

In the Weiss family, both the boys have Fragile X and ASD. They are an Xtraordinary family because they have a good sense of humor about life’s challenges and they never stop going on Xtraordinary adventures as the “Fab 4.” They go on week-long canoe trips in the wilderness and have taught their boys to bike, Nordic ski, and alpine ski very well! They never look at the obstacles, only the possibilities!

—Michelle Dueck

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Robert Goldstein

Robert Goldstein was nominated by his mom, Donna Goldstein

What makes Robert Xtraordinary to you?

Robert is an amazing father and husband. He has two sons with Fragile X. A kind, patient man who is truly xtraordinary to everyone he meets. He may be my son but he’s a wonderful human being.

—Donna Goldstein

A young woman Nicole Brooke Kuperman with dark hair, tortoise shell glasses, and headphones around her neck.
Nicole Brooke Kuperman

Nicole Brooke Kuperman was nominated by her dad, Roger Kuperman

What makes Nicole Xtraordinary to you?

Nicole received her first ever STRAIGHT “A” semester at Midlands Technical College.

—Roger Kuperman

A young boy Gus Hansen sitting on a white chair and wearing a tropical blue and white shirt, and a huge smile.
Gus Hansen

Gus Hansen was nominated by his mom, Valerie Hansen

What makes Gus Xtraordinary to you?

Gus is adorable, clever, funny, and is always charming everyone. He is 4 years old. He was diagnosed with Fragile X syndrome when he was 22 months old. He’s been in therapies since he was 1 year old. He continues to amaze us and does new things every day. He loves going to the water park, playing in the dirt, watching Blippi, playing with his guitars, and playing with his brothers. Gus is xtraordinary because he spreads smiles and joy everywhere he goes.

—Valerie Hansen

A young boy Grayson is wearing a t-shirt and shorts and sitting on a playground apparatus.
Grayson Lazzell

Grayson Lazzell was nominated by his mom, Miranda Lazzell

What makes Grayson Xtraordinary to you?

Grayson is the happiest little boy you will ever meet with the loudest personality. He loves to make others laugh and smile. Grayson continues to amaze us daily and conquer the challenges brought his way. He loves school, his dog Paisley that he recently renamed “Cookie,” and being surrounded by family. We love you Grayson!

—Miranda Lazzell

University of South Carolina Magna Cum Laude graduate Lauren Tiare Kuperman accepting her diploma, wearing graduation gown and four-sided hat.
Laurel Tiare Kuperman

Laurel Tiare Kuperman was nominated by her dad, Roger Kuperman

What makes Lauren Xtraordinary to you?

Lauren just graduated from the University of South Carolina magna cum laude with a double major in animation media arts and art studio.

Laurel Tiare Kuperman just graduated  May 2022 with honors from the University of South Carolina magna cum laude with a double major in animation/media arts & art studio.

—Roger Kuperman

Mother and daughter, Katy and Gwynn Merrill, laughing together.

Katy Merrill, right, with her daughter Gwynn.

Katy Merrill

Katy Merrill was nominated by her mom, Patty Neufeld

What makes Katy Xtraordinary to you?

Katy is an amazing mom to Gwynn! Katy has taken her to see Dr. Hagerman (at the MIND Institute) and her team since she was a baby. And a shout out of gratitude for their care of Gwynn!

She is now 5 years old! And you can see the joy in Gwynn’s face in this picture and how Katy is attuned to her and the two of them together in a moment of joy! Katy puts in massive amounts of work to get her the care and attention so she can thrive. I am honored to be her mom!

—Patty Neufeld

Jackson wearing a black t-shirt and blue baseball cap (on backwards), outdoors on busy street.
Jackson Hipps

Jackson Hipps was nominated by his mom, Stacy Montana

What makes Jackson Xtraordinary to you?

Jackson is the light in every room. He loves life, family, friends, and music. He has a great sense of humor and cares deeply for his people.

—Stacy Montana

A young man Bryan Muma on his front lawn next to a sign that reads SOMEONE XTRAORDINARY LIVES HERE.
Bryan Muma

Bryan Muma was nominated by his mom, Lee Muma

What makes Bryan Xtraordinary to you?

Bryan is such a loving and gentle young man. He makes us all better people! Plus, he gives the best hugs and head rubs!

—Lee Muma

15 members of the Sanchez family, outdoors in a park wearing matching navy blue t-shirts.
The Sánchez Family

The Sánchez Family was nominated by family member Esther Martin

What makes the Sánchez family Xtraordinary to you?

Our affected children are angels and make our lives happy even in the day-by-day struggle.

—Esther Martin

A young boy Zack Griffin outdoors on a farm in a field of green grass petting a donkey.
Zack

Zack was nominated by his mom, Elizabeth Griffin

What makes Zack Xtraordinary to you?

Zack is so full of love! He always serves his family by bringing us water, taking our dishes to the sink, turning on the lights, and lots of other things. He loves horses, dogs, his nephew, Theodore Tugboat, and root beer. My life is so rich because of this sweet son and I am grateful for all he teaches me.

—Elizabeth Griffin

A young boy who has Fragile X syndrome, Cesar, wearing a yellow t-shirt, blue shorts, and a big smile, standing in front of a trampoline.
Cesar

Cesar was nominated by his grandmother Hilda Morales

What makes Cesar Xtraordinary to you?

He is very smart, always smiling, sweet, and lovely. He learns but not like the other kids, needs more time. Loves to eat almost anything.

—Hilda Morales

A young man who has Fragile X syndrome, Denny Haugen, wearing a turquoise shirt and a winning smile sitting on his front porch.
Aaron Haugen

Aaron Haugen was nominated by his parents, Denny and Marcia Haugen

What makes Aaron Xtraordinary to you?

Aaron loves life and loves people. He interacts with others well and engages in many meaningful relationships. Aaron looks for the good in everyone he meets, without even realizing he is doing that.

—Denny and Marcia Haugen

Kelley, in her wedding dress and holding a bouquet, kissing her mother Denise on the cheek.

Denise Devine, right, with her daughter Kelley Dunphy.

Denise Devine

Denise Devine was nominated by her daughter Kelley Dunphy

What makes Denise Xtraordinary to you?

She has been a part of the Fragile X community since 1997. Leader of the Western Massachusetts CSN group, trailblazer of the year in 2015, CSN Award in 2016, Public Policy committee member, mentor program chair for advocacy day. She has participated in many research studies along with attending conferences and advocacy days for years. She is my Xtraordinary role model!

—Kelley Dunphy

Linda Sorensen wearing a gold tiara addressing a crowd from a lecture stand.
Linda Sorensen

Linda Sorensen was nominated by the NFXF team

What makes Linda Xtraordinary to you?

Linda Sorensen is an Xtraordinary person — there is no denying it! She has been a part of this community for almost 20 years, serving in various roles at the NFXF and leading the way as executive director for the last five years. She is a tireless advocate for personal agency and her ability to connect and empower our community toward positive change is amazing. Linda, we think you are Xtraordinary!

—Hilary Rosselot on behalf of the NFXF team

Danielle and Joey in a car, with Danielle driving and Joey showing Number 1 with his hand and finger.
Danielle

Danielle was nominated by Joey Gerardi

What makes Danielle Xtraordinary to you?

Danielle [Joey’s self-direction support person] has been with me for about five years. She took over for Tammi who was with me for 14 years. She takes me to work at CVS and art class and all the places I go in the community.

—Joey Gerardi

Giorgio in shorts and a t-shirt on the playground.
Giorgio

Giorgio was nominated by his mom, Valentina Muro

What makes Giorgio Xtraordinary to you?

“JoJo” is three years old and my middle child. He has recently been diagnosed with FXS and ASD but he is the sweetest boy in the world. He loves books, he loves reading with his older brother, and he loves “putting the ball in the hoop” aka playing basketball.

—Valentina Muro

A young boy who has Fragile X syndrome, Ayden, outdoors on a beach among other beachgoers wearing swim clothes and a delightful smile.
Ayden Shelow

Ayden Shelow was nominated by his mother, Alysha Arbogast

What makes Ayden Xtraordinary to you?

Ayden is an amazing, sweet, smart, caring child and his laugh is contagious. He is my lovable soon-to-be 13-year-old son, born on July 25th. He has taught me patience and to love the little things in life that most take for granted.

—Alysha Arbogast, 2022

Andrew Pritchard, an adult with Fragile X syndrome, dressed as Santa and waving with his mom and dad sitting on each arm of the chair he's sitting in.
Andrew Pritchard

Andrew Pritchard was nominated by his mom, Mary Pritchard (and his dad)

What makes Andrew Xtraordinary to you?

What makes Andrew Xtraordinary is his love of playing Santa for his friends and family. He enjoys having them perch on his lap while he gives them presents. Andrew looks forward to our extended family gathering every year and has missed seeing everyone during the pandemic. He is hopeful we can once again have the “50 Pritchards” together in person this holiday season!

—Mary Pritchard

A beautiful young woman with Fragile X syndrome, Michelle, wearing an elegant lace gown, elbow-length white gloves, and a pink wrist corsage.
Michelle

Michelle was nominated by her mom, Melinda Erhardt

What makes Michelle Xtraordinary to you?

She gives life a whole new meaning. She’s very compassionate and she likes to help others if they are upset.

—Melinda Erhardt

The Maderia family, including dad Arron and mom Jessica, two sons and a daughter, posing in front of a winter mountain backdrop.
Aaron and Jessica Maderia

Aaron and Jessica Maderia were nominated by Matt Swiger

What makes Aaron and Jessica Xtraordinary to you?

Aaron and Jessica are the most patient and caring parents to their three kids. Their twin boys are the joy of their lives and their daughter brings happiness to every moment. They have been advocates for the boys in every aspect of their lives, from school to adaptive sports. They have participated in X trials even having to drive three hours one way. These two are Xtraordinary Parents, Advocates, and Humans!

—Matt Swiger

The whole Tomsik family, including grandmas, uncles, aunts, cousins, sisters, nieces, nephews, father, daughter, sons, and Sarah.

Tomsik family grandmas, uncles, aunts, cousins, sisters, nieces, nephews, father, daughter, sons, and Sarah.

The Tomsik Family

The Tomsik family was nominated by Sarah Robinson

What makes the Tomsik family Xtraordinary to you?

They are all so unique and wonderful!! We have a long family history of Fragile X!

—Sarah Robinson

A young boy with Fragile X syndrome, Jack, laughing joyfully on an outdoor swing.
Jack

Jack was nominated by his mom, Tiffany Peabody

What makes Jack Xtraordinary to you?

Jack’s had challenges since the moment he was born, he had to be resuscitated at birth from 90-second shoulder dystocia. He is my little fighter, he’s strong and brave and pushes past all the developmental and intellectual delays. With the help of his big sis, he is learning to persevere through every challenging moment. He’s the sweetest, happiest little boy and we’re learning all the possible resources and tools available to help him thrive.

—Tiffany Peabody

Please visit page 1 to learn more or to nominate your xtraordinary individual.

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