Alexander Matthew Foundation

Alexander Matthew Foundation X-ALD destroys families by taking their sons before they've had a chance to enter puberty. This is why Alexander is giving it his all to beat this disease!

On March 24, 2015 we received some devastating news that is every parent's worst nightmare. We were told that our 7 year old son Alexander Cardenas has a rare genetic disorder called X-linked Adrenoleukodystrophy (ALD). This disorder mainly affects the nervous system and the adrenal glands, which are small glands located on top of each kidney. In this disorder, the fatty covering (myelin) that ins

ulates nerves in the brain and spinal cord is prone to deterioration (demyelination), which reduces the ability of the nerves to relay information to the brain. If left untreated most children only live a few years after symptoms begin. We are lucky enough that we caught this disorder in its early stages. We are also lucky to be working with the best doctors in treating this disorder. Unfortunatly our family will have to travel back and forth to Minnesota as these doctors are located at the University of Minnesota Children's Hospital in Minneapolis. But with everyone's help and prayers we know that Alexander will be able to beat this genetic disorder and live a healthy life. We asked Alexander the other day what he wants to be when he grows up and he said a Doctor. When we asked him why, his response was that he had been to so many doctors appointments that he already knows what to do. So for those of you that know Alexander, you know that he is the most caring and lovable person in the world. That is why we need everyone's help to keep his dreams of becoming a Doctor alive. The care and concern, the special needs of Alex, and the uncertain length of the treatments will make us face a harsh financial reality. Because this disease is at a research stage Alex will be undergoing chemotherapy, gene therapy and possibly a bone marrow transplant. As his parents, we will both cut time from work to be there for Alex and his siblings during each step of the way. We want to raise awareness and help the FL X-ALD Newborn Testing legislative bill get the support it needs to pass. Thanks for all of your support and help!! Victor, Jhoanny and the rest of the Cardenas Family

------

El 24 de Marzo, 2015 recibimos devastadores noticias que son la pesadilla de cualquier padre. Nos informaron que nuestro hijo de 7 años, Alexander Cardenas, tiene un desorden genetico raro llamado Adrenoleucodistrofia ligado al cromosoma X (X-ALD). Este desorden afecta principalmente al sistema nervioso y las glandulas suprarenales, las cuales son glandulas pequenas localizadas encima de cada riñon. Esta enfermedad ocasiona la acumulación de ácidos grasos de cadena muy larga en el sistema nervioso, en las glándulas suprarrenales y en los testículos, lo cual interrumpe la actividad normal. Si no se trata la mayoria de los niños viven unos cuantos años despues de ser diagnosticados. Somos afortunados ya que descubrimos esta enfermedad en una etapa temprana. Tambien somos afortunados de estar trabajando con los mejores doctores que tratan este desorden. Desafortunadamente nuestra familia tendra que viajar constantemente entre la Florida y Minnesota ya que los doctores estan localizados en el Hospital de Niños de la Universidad de Minessota en Minneapolis. Sin embargo, con la ayuda y las oraciones de todos estamos confiados de que Alexander va a sobrepasar esta enfermedad y va a poder tener una vida saludable. En dias pasados le preguntamos a Alexander que queria ser cuando creciera, y nos dijo que queria ser un doctor. Cuando le preguntamos porque, nos respondio que ya habia ido a tantas citas medicas que ya sabia que tenia que hacer. Para aquellos que conocen a Alexander, saben que es la persona mas cariñosa y amorosa en el mundo. Por eso necesitamos la ayuda de todos para mantener su sueño de ser doctor vivo. La preocupación y el cuidado, las necesidades especiales que Alex pueda tener, y el periodo incierto de tiempo que puedan durar los tratamientos nos van a situar en una realidad financiera dura. Debido a que esta enfermedad todavia esta en una etapa de investigación Alex va a recibir quimoterapia, una terapia de genes y posiblemente necesitara un transplante de medula osea. Siendo sus padres, vamos a tomar tiempo fuera del trabajo para poder servir de soporte para Alex, su hermano y hermana durante cada paso de este proceso. Queremos crear conciencia y ayudar a que pase la propuesta de ley de la Florida la cual requeriria que todos los recien nacidos en el estado sean examinados por esta tipo de enfermedad. Gracias por todo su apoyo y ayuda!! Victor, Jhoanny, y el resto de la Familia Cardenas. Please feel free to contact us with any questions!

Celebrating Rare Disease Day at FSU Florida Institute for Pediatric Rare Disease.
02/27/2026

Celebrating Rare Disease Day at FSU Florida Institute for Pediatric Rare Disease.

Today, I don’t get to celebrate my son’s 18th birthday the way I wish I could. Instead, I honor the life he lived.For ei...
01/15/2026

Today, I don’t get to celebrate my son’s 18th birthday the way I wish I could. Instead, I honor the life he lived.

For eight precious years, I was blessed to hold Alexander, love him, and learn from him. Even now, his spirit continues to guide everything we do through the Alexander Matthew Foundation—supporting families living with rare diseases, helping those still searching for a diagnosis, and walking beside those who have experienced loss.

So many families in the rare disease community feel unseen, unheard, and alone. No one should have to navigate this journey without support. That is why this work matters so deeply—and why Alexander’s legacy matters. Through him, we are able to bring hope, resources, and compassion to families who need it most.

I am incredibly grateful for the love and support we’ve received from our friends and family. If you’ve ever wanted to make a difference, today is a beautiful day to do so—by learning, sharing, donating, or simply standing with a family in need.

Thank you, Alexander, for your light and your purpose.
Happy 18th birthday in heaven. Until we meet again. 🤍

Nine years may seem like a long time, yet it feels like just yesterday you left our arms. No amount time can fill the em...
10/14/2025

Nine years may seem like a long time, yet it feels like just yesterday you left our arms. No amount time can fill the emptiness that was left, Alexander continues to be what gives us the energyto puah forward in advocacy for the Rare Diseases. Teaching us more in a short time here than a lifetime could ever hold 💕

Time moves forward, yet love never fades. Missing you every single day, my sweet Alexander. 

09/03/2025

Today, on National Grief Awareness Day, we honor those living with grief in the rare disease community.

Jhoanny holds her late son, Alexander, in her heart as she volunteers with NORD to support other families.

“Grief is more about learning to live with it than getting through it. Learning to live with grief takes time, and it involves finding ways to channel sadness and pain into meaning and purpose,” Jhoanny says.

When she connects with families who have just experienced loss, she reminds them there is no timeline for healing. Be gentle with yourself. And know that you are not alone.

with .repost・・・Today is . We at NORD honor those living with , especially in our community.Jhoanny holds her late...
08/31/2025

with .repost
・・・
Today is . We at NORD honor those living with , especially in our community.

Jhoanny holds her late son Alexander, who was diagnosed with X-ALD, in her heart and volunteers with to support families in similar positions. She says: “Grief is about learning to live with it. There is no timeline. Give yourself grace and time.”

Be gentle with yourself. You are not alone. Together we are strong.

08/01/2025

Still feels like yesterday. There was so much hope we had on the treatment. While our outcome was not what we expected and had hoped for we are still fighting this fight. We still try to make a difference by educating, raising awareness and planing just one more seed of information that will continue to help advance progress in the rare disease community.

Alexander is the continuous motivation behind what we do and how we live our lives, the force that helps us move toward.

Love you forever! Alexander

Newborn Screening is critical in helping children and families receive early diagnosis which leads to better outcomes. H...
04/28/2025

Newborn Screening is critical in helping children and families receive early diagnosis which leads to better outcomes.

Had Alexander been diagnosed at birth, we would have had a greater probability of having a early treatment and prognosis .

It takes only a few minutes to share your support!

The Administration recently eliminated the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), and many federal newborn screening activities may be impacted by other changes at the Department of Health and Human Services (HHS). The ACHDNC is a critical element of the U.S. ne...

State Representative Adam Anderson announcing ‘Sunshine Genetics,’ proposed FL legislation, in an effort to shorten the ...
02/28/2025

State Representative Adam Anderson announcing ‘Sunshine Genetics,’ proposed FL legislation, in an effort to shorten the diagnostic journey faced by many families with rare disorders. In partnership with the FSU Institute for Pediatric Rare Diseases.

Kicking off with FSU Institute for Pediatric Rare Diseases and State Representative Adam Anderson
02/28/2025

Kicking off with FSU Institute for Pediatric Rare Diseases and State Representative Adam Anderson

Thank you for the focus on Pediatric Rare Diseases.
02/28/2025

Thank you for the focus on Pediatric Rare Diseases.

Kicking off with FSU Institute for Pediatric Rare Diseases and State Representative Adam Anderson

Though time passes, for us time also feels to stand at a still. We would be in full celebration mode. Alexander loved c...
01/15/2025

Though time passes, for us time also feels to stand at a still. We would be in full celebration mode. Alexander loved celebrations of any kind, not because of gifts, but the people that would gather. Not a day goes by without remembering all the memories, laughter and the joy you brought to our lives. We miss you more than words can say. Happy heavenly birthday, until we meet again, love always 💕

To open the day at 2024 great conversations with FDA Commissioner and CMS Director. 2024
10/22/2024

To open the day at 2024
great conversations with FDA Commissioner and CMS Director. 2024

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Our Story

On March 24, 2015 we received some devastating news that is every parent's worst nightmare. We were told that our 7 year old son Alexander Cardenas has a rare genetic disorder called X-linked Adrenoleukodystrophy (ALD). This disorder mainly affects the nervous system and the adrenal glands, which are small glands located on top of each kidney. In this disorder, the fatty covering (myelin) that insulates nerves in the brain and spinal cord is prone to deterioration (demyelination), which reduces the ability of the nerves to relay information to the brain. If left untreated most children only live a few years after symptoms begin. We are lucky enough that we caught this disorder in its early stages. We are also lucky to be working with the best doctors in treating this disorder. Unfortunatly our family will have to travel back and forth to Minnesota as these doctors are located at the University of Minnesota Children's Hospital in Minneapolis. But with everyone's help and prayers we know that Alexander will be able to beat this genetic disorder and live a healthy life. We asked Alexander the other day what he wants to be when he grows up and he said a Doctor. When we asked him why, his response was that he had been to so many doctors appointments that he already knows what to do. So for those of you that know Alexander, you know that he is the most caring and lovable person in the world. That is why we need everyone's help to keep his dreams of becoming a Doctor alive. The care and concern, the special needs of Alex, and the uncertain length of the treatments will make us face a harsh financial reality. Because this disease is at a research stage Alex will be undergoing chemotherapy, gene therapy and possibly a bone marrow transplant. As his parents, we will both cut time from work to be there for Alex and his siblings during each step of the way. We want to raise awareness and help the FL X-ALD Newborn Testing legislative bill get the support it needs to pass. Thanks for all of your support and help!! Victor, Jhoanny and the rest of the Cardenas Family ------ El 24 de Marzo, 2015 recibimos devastadores noticias que son la pesadilla de cualquier padre. Nos informaron que nuestro hijo de 7 años, Alexander Cardenas, tiene un desorden genetico raro llamado Adrenoleucodistrofia ligado al cromosoma X (X-ALD). Este desorden afecta principalmente al sistema nervioso y las glandulas suprarenales, las cuales son glandulas pequenas localizadas encima de cada riñon. Esta enfermedad ocasiona la acumulación de ácidos grasos de cadena muy larga en el sistema nervioso, en las glándulas suprarrenales y en los testículos, lo cual interrumpe la actividad normal. Si no se trata la mayoria de los niños viven unos cuantos años despues de ser diagnosticados. Somos afortunados ya que descubrimos esta enfermedad en una etapa temprana. Tambien somos afortunados de estar trabajando con los mejores doctores que tratan este desorden. Desafortunadamente nuestra familia tendra que viajar constantemente entre la Florida y Minnesota ya que los doctores estan localizados en el Hospital de Niños de la Universidad de Minessota en Minneapolis. Sin embargo, con la ayuda y las oraciones de todos estamos confiados de que Alexander va a sobrepasar esta enfermedad y va a poder tener una vida saludable. En dias pasados le preguntamos a Alexander que queria ser cuando creciera, y nos dijo que queria ser un doctor. Cuando le preguntamos porque, nos respondio que ya habia ido a tantas citas medicas que ya sabia que tenia que hacer. Para aquellos que conocen a Alexander, saben que es la persona mas cariñosa y amorosa en el mundo. Por eso necesitamos la ayuda de todos para mantener su sueño de ser doctor vivo. La preocupación y el cuidado, las necesidades especiales que Alex pueda tener, y el periodo incierto de tiempo que puedan durar los tratamientos nos van a situar en una realidad financiera dura. Debido a que esta enfermedad todavia esta en una etapa de investigación Alex va a recibir quimoterapia, una terapia de genes y posiblemente necesitara un transplante de medula osea. Siendo sus padres, vamos a tomar tiempo fuera del trabajo para poder servir de soporte para Alex, su hermano y hermana durante cada paso de este proceso. Queremos crear conciencia y ayudar a que pase la propuesta de ley de la Florida la cual requeriria que todos los recien nacidos en el estado sean examinados por esta tipo de enfermedad. Gracias por todo su apoyo y ayuda!! Victor, Jhoanny, y el resto de la Familia Cardenas. Please feel free to contact us with any questions!