X out ALD is a 501(c)(3) organization comprised of four Minnesota families. We want to see every child with ALD live a long and happy life. All of our families have boys with ALD. All the boys are also patients at the University of Minnesota Masonic Children’s Hospital. We saw how little funding there is for ALD research and decided to do everything we could to help support ALD research. We won’t stop until we X out ALD!
President: Amanda Valdez
Vice President: Jamie McAnelly
Treasurer: Dan Groh
Secretary: Cassie Groh
We are Ken, Amanda and Niko from Minneapolis, MN. We had no knowledge of adrenoleukodystrophy (ALD) prior to our son, Niko, being born in June of 2018. He was diagnosed with ALD through newborn screening. Niko's at the time four-year-old cousin was diagnosed with ALD following his diagnosis. Niko is currently being monitored at the University of Minnesota's Masonic Children's Hospital. We feel so fortunate to have ALD experts in our backyard. On this short yet intense journey, we have learned how early diagnosis and monitoring are life saving. We are forever indebted to those who made newborn screening for ALD a reality and for the medical professionals dedicating their careers and lives to ALD research, monitoring and treatment.
ALD has rocked our world both in Niko's diagnosis and future family planning. This journey has brought me to my knees and tested me every way possible, but I will not let ALD define my family. Niko and all boys with ALD deserve to live long, healthy, happy lives and that is why our goal is to X out ALD!!!
Hello! Meet the McAnellys: Wade, Jamie, Murray (5) Meyer (2) and Miller McAnelly (7 months). Our boys were diagnosed thanks to the MN Newborn Screen in January of 2019. And while we are devastated by this news, we are also so grateful for the knowledge ahead of time so that we can watch for signs and symptoms. Luckily living in Minnesota, we are at the BEST research hospital in the world. Just by being born, Meyer has already saved his big brother's life. We get routine MRIs every 6 months as well as labs to monitor their adrenal function. So far, our boys are asymptomatic. We want to be a part of this great team to give the amazing medical staff all the tools they can get to fight this disease.
We are Dan, Cassie and Brock Groh. Since we had family history of ALD, we were fortunate to have Brock tested at birth. Minnesota started newborn screening for ALD in 2017, so without family history we would not have known. Brock was monitored from birth and unfortunately a lesion was found on his brain in December of 2018. He underwent a successful bone marrow transplant in January of 2019. All his MRIs post-transplant have shown no active disease. Due to the University of Minnesota Masonic Children’s hospital and Dr. Troy Lund, Brock is winning his battle with ALD. We want to help support Dr. Lund and the entire team to continue to help other families X out ALD.
Hello! We are the Steichens: Jennifer, Matt, Levi (12), Calvin (9), Ira (7) and Desmond (4). All four of our children were born before ALD was added to the Minnesota Newborn Screen in 2017. Our son Ira was diagnosed at the age of 4 after his cousin tested positive for ALD on his newborn screen. Thanks to an early diagnosis, Ira is being closely monitored by an incredible team of doctors at the University of Minnesota Masonic Children’s Hospital. He is asymptomatic so far and doctors will be able to begin treatment at the earliest signs of any active disease.
A routine brain MRI in the summer of 2019 revealed that Ira also had an unrelated congenital condition that required him to undergo brain surgery that fall. The surgery was successful and he continues to be monitored for that condition as well.
We feel very fortunate to have access to some of the world's leading ALD specialists right here in the Twin Cities. This hospital has performed more bone marrow transplants for ALD patients than anywhere else in the world. Through X out ALD, we wish to support the team that will continue to care for our son. Their research has the potential to generate more positive outcomes for ALD patients worldwide.