X out ALD is a 501(c)(3) organization comprised of five families all of whom have boys with ALD who are patients at the University of Minnesota Masonic Children's Hospital. We want to see every child with ALD live a long and happy life. 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: Marie Adrian
Vice President: Amanda Valdez
Treasurer: Dan Groh
Secretary: Kirsten Finn
Board Member: Cassie Groh
Board Member: Jamie McAnelly
Founding Member: Jennifer Steichen
Hello from Michael, Marie, Oliver, and Odin Adrian from Stillwater, MN. Our family learned about adrenoleukodystrophy (ALD) via MN newborn screening when Odin was born amidst the pandemic in August 2020. Fortunately, Oliver had also been screened when he was born in 2018 and we were able to confirm his negative status via genetic testing. Coming from a large family, we have since identified 10+ females with ALD, and five men/boys with ALD in our family. We are beyond grateful to have Dr. Gupta at the University of Minnesota following Odin, to participate in the research registry and to have Dr. Lund's lab diligently searching for a cure. Being a part of this organization gives us an incredible opportunity to contribute our time and energy to raise awareness and funds to cure the boys and X out ALD!!!
We are Ken, Amanda, Niko and Elise Valdez 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 cousin, who was four-years-old at the time, was diagnosed with ALD following Niko’s 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!
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.
We are the Finn Family: Craig, Kirsten, Hunter (11), Jasper (11) and Conner (5). We are originally from Canada and now residing in Overland Park, Kansas! Conner was diagnosed by chance with ALD in June 2020 while we were still in Canada at the beginning of the pandemic. Conner presented with cerebral disease upon diagnosis and required an urgent, lifesaving blood and marrow transplant. There are no ALD Specialists in Canada and they could not provide any timeline to treatment. We turned to Dr. Troy Lund at the University of Minnesota who generously and compassionately guided our family through transplant. As terrifying as it was, there was not a single day we doubted that our son was in the very best hands! Because of the work done at the University of Minnesota, our son had the best possible outcome we could have hoped for. Our son is alive and well today because of the groundbreaking work being done by Dr. Lund and his team. We want every single ALD boy to receive the best possible outcome and care and we are passionate about being involved in ensuring that the amazing work being done at the University of Minnesota continues so that we will indeed X out ALD!!!
We are the McAnelly Family and our 3 healthy and crazy boys are: Murray (6) Meyer (3) and Miller (1.5). Our 2 older boys were diagnosed shortly after Meyer was born in 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, we have one of the leading Leukodystrophy centers in our back yard at the University of Minnesota.
Just by being born, Meyer has already saved his big brother's life and our youngest, Miller, was born via IVF with PGD and is a perfect bone marrow match for his big brothers. All because of the knowledge of ALD. You have to find those silver linings. We want to be a part of this great team to give the amazing medical staff all the tools they can to fight this disease.
Please don't hesitate to contact us if you need support during this time. We'd love the opportunity to be there for you and your family.
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