It’s not easy bein’ BLUE

It’s not that easy bein’ green
Having to spend each day
The color of the leaves

When I think it could be nicer
Bein’ red or yellow or gold
Or something much more colorful like that

Kermit the Frog

It’s not easy being BLUE either.

ALD makes a lot of people in our community blue. It’s a disease that effects 1/17,000 people worldwide and causes symptoms including adrenal insufficiency, loss of vision and hearing, learning disabilities, seizures, loss of speech, fatigue, bladder and bowel issues, loss of mobility, and if not treated early (** and without a certain amount of luck) can lead to death.

While there’s so much to make us all blue, there is reason for our community to celebrate.  ALD is a disease that has made some HUGE strides in the last few decades – improved treatments, new treatments, and newborn screening. The momentum is has started and we can’t let it slow down.

A year ago, my friend – and ALD warrior, Janis Sherwood, – had a magical idea. We always discuss possible ways of how the ALD community can better spread the word about our disease. Blue being the color connected to leukodystrophy awareness, Janis’s plan was — ALD Makes Me Blue. She wanted to turn our ALD blues into ALD BLUE — Dye our hair BLUE, paint our nails BLUE, wear BLUE, paint our whole darn bodies BLUE. She wanted our community to turn BLUE and then pass it on, like a dare. 

Janis didn’t stop there with her plan. She wanted to have a way for the public to learn more about ALD and even make a small (or HUGE) donation to one of the many ALD organizations.

ALD organizations connected. A website was created. ALDMMB got itself onto social media. Some sore of fancy filter was put on Instagram:

Today is the day!!!

February is Rare Disease Month and it’s time to turn the world BLUE!! Our family is going to start our month of BLUE and we want you – our duct tape – to do the same. Make yourself BLUE and don’t forget to take a photo and post it on Facebook and/or Instagram and TAG friends!!! 

Please take a peek at the site, learn more about ALD, be BLUE, and make a donation.



Love, Jess

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