X out ALD presents the 2026 Outrun ALD Virtual 5K

Join our team to raise money for ALD research! When Bennett was just over a week old we found out Bennett has X-ALD through Washington states newborn screening process and since have found Sydney also has it. It was a long process to determine this diagnosis and has been incredibly hard, but one we’ve gotten through by leaning on our community of family and friends. We are raising money for X-ALD and look forward to the virtual 5k.

We will walk from the community center in Issaquah and will do a 5k together for anyone who wants to join us at 3pm on the 19th. We will leave promptly at 3:30pm. If not, we hope you can walk or run virtually in support of the event and research towards X-ALD.

We found out this news from a newborn screen that Washington State does on all newborns. We are lucky Bennett has no symptoms at this time and Sydney isn’t at risk for symptoms until later in life, but it does impact our family planning for future children. Bennett and Sydney are both healthy and living life in the present moment. We appreciate your support here, we feel so lucky to have our friends and family. 

ALD is a deadly genetic disease carried on the X chromosome that affects 1 in 18,000 people. The majority of those severely affected are boys and men. Current statistics show that 4/10 boys diagnosed with this disease will develop the cerebral form of ALD. This brain disorder destroys the myelin or protective sheath wrapped around the neurons. These nerve cells are what allow us to think and control our muscles. Most cases are found in childhood between ages 4-10 years of age when the symptoms progress. Seizures, blindness, deafness, loss of muscle control and progressive dementia leading to death or permanent disability within 2-5 years from diagnosis. Thankfully, ALD was added to the WA state newborn screen in 2018. Not all families are this lucky as it’s not on all states newborn screening. We are working with the best research hospital (The University of Minnesota/U of M) in the world for our boy’s disease. When Bennett reaches two years old he will get routine MRIs every 6 months, but starting now he is doing labs to monitor his adrenal functions. Bennett does routine blood work every 3-4 months. If a lesion is picked up on the MRI, the treatment is either a bone marrow transplant or gene therapy to “reboot” their bodies and halt the disease which would lead to a cure. Not without risk though.

For women symptoms typically present themselves in 40s-50s with 88% of women experiencing symptoms by age 80. For women the symptoms impact mobility. There is no way to know what form will present for either of us until symptoms onset or a lesion is found on an MRI. We also have no idea if we won’t be impacted at all by ALD, and will continue to live healthy lives. It’s all we can pray for. 

Given this is such a rare disease fundraising is so important to make an impact on research towards cures. Please consider donating in support of an amazing organization. This fundraiser supports the research towards ALD and is something near and dear to our family. We hope you can join us on our walk and can help us as we fundraise to X out ALD.