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Posted 2021-07-04T21:37:00Z

What is ALD?  Making A Donation!  Participating Virtually!

Greetings Friends, 

Happy Independence Day!  

I am going to cover a few things in this post since we’ve been receiving several questions on a few different topics.  So here goes! 

What is Adrenoleukodystrophy, or ALD?  

Trying to find something to succinctly describe the utterly insidious power of ALD and how terribly sad it is for families who experience its devastation was not my favorite web search.  However, I found this educational video and, while it might seem like a lot of information and force you to think back to a high school biology class, it does the trick.  It provides a solid overview of just how horrible and far reaching ALD is and ends on a high note with the promise of medical and scientific breakthroughs on the horizon.  

 I hope you will take time (9 minutes) to watch.  Even more, it illuminates the importance of supporting Dr. Van Haren’s research financially. 

Link: What is Adrenoleukodystrophy

How can I make a donation to Dr. Keith Van Haren’s research lab at Stanford University?

Our hope is that everyone who makes a donation will also take the opportunity to do something for Ben’s Challenge.  However, we know this might not be the case and are okay with that too!  The easiest way to make a donation is to give online with the following link.  If you prefer sending a check, there is a physical address at the bottom of the web page.  Giving in Ben’s honor will help us keep track of who you are, and our hope to reach our goal of $20,000 for Ben’s Challenge.   

Link:  Support ALD research in Ben's Honor

How can I participate virtually?  

As you know, the actual challenge is scheduled for 4:00pm on Thursday, July 29th where participants of all fitness and adventure levels will be hiking different distances of the Mt Rose Summit trail. Some participants will even be hiking in the dark— the idea being to emulate in a small way, what it must feel like to be blind.  

If you are participating virtually, join in at the same time!  The simple objective would be to buddy up with a spouse, partner, friend, or family member and take turns blind-folded walking around your neighborhood— trusting your buddy to describe what’s in front of you and assist you in your experience.  This is something Ben did daily— he experienced blindness and trusted completely in his friends and family.  (This can also happen at a different time!)

Alternatively, you could set a bigger goal!  If you have a sport or activity or an adventurous itch to scratch, please pursue it!  Do a night hike or bike ride.  Eat out or do a family dinner blindfolded.  Take a class or do your morning routine blindfolded. Be creative!

Whatever you decide to do please let us know by posting in the comments on Ben’s PostHope page or on Instagram or Facebook.  We are curious to see how our amazing community decided to take Ben’s Challenge to heart.  

Thank you!  Thank you!  Thank you!  

Katie, Matt and Luke

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Comments (1)

  • Hunter May
    Hunter May

    What a beautiful post of community, LOVE, and sharing how to change our views by taking a moment to have no sight. Lead only with our hearts and trust in another. You. can count me ALL IN! In Ben’s memory I pledge to raise money myself, and give 110% of what is raised to the Menante’s favorite charity for ALD (adrenaleukodystrophy…what a mouthful) I tried spelling without looking, so I probably murdered it, so I’ll stick with ALD. ❤️🙏😅 On July 29th, it’s my guess that I’ll be somewhere in Europe. So on this day, no matter where I’m at in the world, I’m going to try to find support from a stranger. Someone I have recently met in my travels, and trust them to guide me across as many miles as I can log, either through cities, or hopefully on a trail into the mountains. We will see. I think the bigger challenge will be in finding a new friend, one that I can trust, while I’m blindfolded, to guide me into the darkness. I will try to make multiple post from now, to the 29th, and see if I can get friends to donate $1 for every mile I log, that’s not asking much, everyone should be able to afford that. 🙏❤️🦋 Thanks so much for the share, and keeping Ben’s spirit alive by having all of us come together to make a difference in the world. Such a beautiful way to celebrate such an amazing young boy, that had to become a man of wisdom far, far too early. ❤️

    2 years ago · Reply