X out ALD presents the 2025 Outrun ALD Virtual 5K

Join our team to raise money for ALD research! We found out Bennett has X-ALD during Washington states newborn screening process and since have found Sydney also has it. We are raising money for X-ALD and look forward to the virtual 5k.

We will walk from our home in issaquah and do a 5k together for anyone who wants to join us at 3pm on the 20th. 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. It’s been a lot to process when also handling a new baby and learning how to be parents. 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. 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 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 just starting to meet 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.  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. 

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.