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Adrenoleukodystrophy (ALD) Online Support Group

Do you have a moment to reach out?

Hello Ben’s Friends ALD member,

Do you remember the feeling you got when you joined the Ben’s Friends ALD Support Group, and you discovered that there really are people who understood what you were going through? Others who knew what it’s like right now for you and your family?

We’ve had new member join us today. Michael’s introductory profile is below.

How about taking a few moments to reach out to Michael and his family?
It’s easy to do: if you are reading this on an email notification, please look below to find this icon in the email image
Click on it.
If the system doesn’t sign you in automatically, do the following:

  • Sign in using your email address (the one that received this email)
  • Say you forgot your password (even if you remember it), and then
  • Follow the instructions on the screen.

Reaching out to Michael will help him and his family, and it will do you good as well, knowing that you’ve done what you can for someone in need of support, just like you were.

Hope to hear from you soon! In the meanwhile, be kind, and stay safe!

Seenie from ModSupport

cc: @trust_level_0

Hi Michael,
Sorry to hear about your son. ALD can be very aggressive. I would highly recommend that you reach out to Dr. Troy Lund at the University of Minnesota Children’s Hospital. He can review your boys MRI and medical records and consult you on the best direction to take. His email is Lundx072@umn.edu. He specializes in stem cell transplant for ALD. I am the founder of Fight ALD and am happy to answer any questions you may have. You can email me at janis@fightald.org. There are also several support groups on Facebook you may want to join. You are not alone in this journey.

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