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Posted 2019-03-10T16:55:00Z

Advocacy and Agency

Update Part I:  ALD Research

It is with much anticipation, humility and hope, that we share this update on the one-year anniversary of Ben’s diagnosis of Cerebral Adrenoleukodystrophy (ALD).  We hope you are inspired to read, click and be a part of something that could end up saving boys just like Ben!

Our journey has led us into a relationship with Dr. Keith Van Haren  at Stanford University where we are learning about the work he is doing with boys diagnosed with ALD.  We feel fortunate to have crossed paths with him and for the privilege we have in partnering with him in a way that will advance the understanding of this most terrible disease. 

Additionally, in the last year, we have made another friend, David Cry.  David has been involved with families living through ALD for over nineteen years.  I have had countless conversations with David, ones full of tears, and ones full of hope, but all of them have been full of honesty, expertise, and data as it relates to ALD and what is happening in Ben’s brain and body. David’s work is critical because he speaks from experience and connects the science and physicians with the needs of families facing ALD. Here is a link to David’s website: The ALD Foundation

We were able to introduce Dr. Van Haren and David and that connection has turned into the exciting news we want to tell you about!  Dr. Van Haren is on the forefront of groundbreaking research as it relates to understanding Ben’s disease.  Dr. Van Haren’s research lab and study is here: Van Haren Research Lab

Regarding this research, here is what David Cry had to say after talking with Dr. Van Haren. “In addition to his very important current work, this new project is essential. The most important question we have asked over the past twenty years is, ‘What causes brain inflammation in boys with ALD?’ Answering this offers hope to boys like Ben.I am starting a global campaign to raise money!  Dr. Van Haren believes boys have crystalized cholesterol esters in their brains that causes the inflammation. In gout, it is crystals in joints. When broken up, symptoms go away. If we can break up the crystals in ALD, it will be the most significant stride we have ever taken.”

I shared this news with our good friends Dr. Edward Perry  and his wife Zoe.  Eddie, a neurosurgeon, was instrumental as we sought answers about Ben last year and was with us the day of and the day after Ben’s diagnosis to help us begin to understand what was happening.  We are thankful that they have decided to be the first to donate $10,000 to Dr. Van Haren’s research.

From Ben’s funds, it is our privilege to communicate that Katie and I are also going to invest $10,000 into this important research.  And, as you are able, we hope that you might consider being involved too.  Any amount matters as is evidenced in the unparalleled generosity of people like you who have been a sustaining force in our lives over the last year. (Thank you!)  We are also going to donate $2,500.00 to the ALD Foundation mentioned and hyperlinked above. We are so very grateful for any way you may decide to donate to these two causes.  Thank you! 

As an update to our June 2018 journal entry: Last summer Ben was in need of a therapy hot tub and your generosity allowed us to actualize this for him.  We have also used a portion of the financial gifts for our time at Island Dolphin Care in Florida and to cover some medical expenses from last year. I am honored and inspired to steward your loving faith in us.  Because the “All Out for Ben” funds will be used over the next few years, I have the funds in a very safe Vanguard Prime Money Market fund earning 2%.  I will not be exposing these donations to any risk. 

Making a Donation: 

The link to participate should you want to get involved is: Dr. Van Haren ALD Research . All you have to do is click “make a gift” at the bottom left.  Then, on the following page in the box for gift designation type “Van Haren Lab.”

Update Part II:  New Born Screening Bill

Within weeks of Ben’s diagnosis, we learned that Nevada is one of the forty states that does NOT screen newborns for this genetic disease.  Doing so is critical because if it is diagnosed, families can take preventative life-saving action before brain inflammation begins or causes irreparable damage (like in Ben’s case and many other boys).  With this knowledge, Dr. Eithne Barton, Erica Olsen and Kris McDougall connected with State Senator Julia Ratti to take steps to see how to move forward with legislation for newborn ALD screening.  As of right now there is a bill in the Nevada State Legislature asking for X-linked ALD to be added to the newborn screening process.  It should be dropped by the end of the month and we will know more soon.  We are hopeful that it will continue to progress though the legislative process and we are planning to testify as needed to make sure no other families have to suffer though a tragedy like the one we are walking through.  
Thank you for taking time to read this update and for being a community of friends far and near that supports us with love, prayers, friendship and so many of our practical needs. We are grateful. 

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Comments (4)

  • Jonna AuCoin
    Jonna AuCoin

    You are all inspiring and well done in rallying efforts globally. I am truly in awe of you.

    4 years ago · Reply
  • Annie Munn
    Annie Munn

    We saw your dear parents this morning at The River Christian and we were wondering if there would be an update. This information is very encouraging and also the work you have done to help Nevada do the screening at birth for ALD. Believing with you all for the power of Ben’s journey🙏🙏

    4 years ago · Reply
  • Stephanie Blume
    Stephanie Blume

    I am just so moved by both you and Katie. I am amazed at your strength and ability to take action and be such a force of love as you lead the way in change for other children with ALS. Thank you for your dedication in the face of all you are going through each day. You are amazing. We love you guys.

    4 years ago · Reply
  • Kenneth Gentner
    Kenneth Gentner

    Katie and Matt God grace the full Empire of BEN. Here for support of any way There is Hope Always so keep Strong! Kenneth Gentner I Believe!

    4 years ago · Reply