September is Leukodystrophy Awareness Month!

September is right around the corner (Can you believe it?!) and it is Leukodystrophy Awareness Month. The color is navy. We will be creating a slideshow in honor of Leukodystrophy Awareness Month.

Here are the details:

If you are interested in your child/children being featured, please send us the following information to with the subject line “Leukodystrophy Slideshow September 2016” by Friday, August 26, 2016.

1. 1 picture of your child/children (children who have passed away may be included as well!) in .jpg format. Please choose a picture where there’s enough space on top and on the sides where I can add name, birthdate, age passed (if applicable) and type of Leukodystrophy.
2. Please include short story of your child – Example: How old they were diagnosed, when they received a transplant (if applicable) and how you found out they had the Leukodystrophy . No longer than 5-6 sentences in length.
3. Please include if your child/children received a transplant and type of transplant.
4. Child’s Leukodystrophy (If unspecified; please let us know).
5. Child’s birthdate – Day, Month & Year; Please include even if child passed away.
6. Day, Month & Year of child’s passing (If applicable!)
7. Link to child’s FB, Caringbridge site, or Website (If available, so people viewing the slideshow can follow your child’s journey.)

The Leukodystrophy slideshow will be published publicly (where everyone can view it and share it!) on our YouTube site, our Facebook page & this blog.

Thank you for allowing us to include your child/children in our slideshow!

*During this month, we will be sharing facts about Leukodystrophies, doing some videos on our YouTube channel, and sharing children who are battling a Leukodystrophy or who passed away from one. If you would like us to feature your child this month, please send us their name (first and last or at least last initial), type of Leukodystrophy and one thing you would like everyone to know about Leukodystrophies (e.g why awareness is important to you, etc.) to or you can also type it under the “Contact Us” box.




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