We hope this finds you well and enjoying the arrival of summer! We have good and promising news to share with you.
Last year several of you participated in the 1st Annual Be Warrior Challenge on Mount Rose in Reno or virtually on your own. Thanks for showing up! It was an incredible evening.
We held the Be Warrior Challenge as a way to remember and honor Ben, get our community together, and to raise money for the Van Haren Lab at Stanford where promising research is being done to develop treatments and therapies for Adrenodleukodystrophy. Thanks to you, we met our fundraising goal of $25,000. Your donations helped fund preliminary research projects in the lab. Because ALD is such a rare disease, securing NIH grants demands initial research to be funded privately to ensure a more promising outcome with government funds.
Before Ben went to heaven on July 31, 2020, Matt and I made the decision to donate Ben’s brain tissue to Stanford and other labs around the world doing research to cure, arrest, or treat ALD. Making the decision was yet another one of those brutal decisions we had to make. Two weeks ago we Zoomed with Dr. Van Haren to learn more about his research and how Ben’s tissue is contributing to the research.
The foto headlining this post is actually a picture of Ben’s brain tissue. Dr. Van Haren did the work of describing exactly what we are looking and the significant progress of the research. He explained,
This is an image of Ben’s ALD brain lesion under study in the Van Haren Lab. It shows a blood vessel (bottom right) surrounded by inflammatory cells (in green) and an important inflammatory marker, NLRP3/IL-18 (in orange) that the Van Haren Lab is studying as a therapeutic target. The Be Warrior foundation started and has continued to support this research effort!
With your continued support, the Van Haren Lab will begin to test new drugs that could treat ALD brain lesions without the need for a bone marrow transplant.
Because of the great response from our formidable community and the hope and promise of Van Haren’s research, we raised our fundraising goal to $40,000 and built a website to make the entire event more streamline!
The date for the 2nd Annual Be Warrior Hike is August 27th, 2022! We hope you will join us on the trail or virtually! If for some reason you are not able to, we appreciate your donations to the lab so very much.
Whether you’re on the fence or not sure if you’ll be in town or concerned about fire season, PLEASE STILL REGISTER! There is no cost to register and we are using signups as a way to build our data base and ability to communicate with everyone.
Below is the link to the website where you can sign up, order T-Shirts and make a donation.