August and September bring about peak birth rates in the United States. Each newborn is screened for a variety of rare, potentially fatal, yet treatable disorders. However, one disease that is life-threatening in boys has not made the national or state priority list: Adrenoleukodystrophy, known as ALD.

With ALD, early detection, diagnosis, and treatment saves lives — newborn screening can detect ALD prior to the onset of symptoms in the 1 out of 17,000 babies born with ALD each year.

    • The childhood cerebral form of ALD is the most severe type of the disorder and affects 1 out of 3 of boys with ALD
    • -Boys with the cerebral form of ALD develop normally until symptoms appear, usually between 4-10 years of age 2
    • Because symptoms are attributed to behavioral or learning problems, ALD is often diagnosed late or misdiagnosed as ADD/ADHD-If left untreated, ALD causes permanent neurological damage within 6 months to 2 years after the onset of symptoms or diagnosis of childhood cerebral disease 3
    • ALD can also affect the adrenal glands (adrenal insufficiency), which puts boys at risk for life-threatening hormonal imbalances
    • The Bottom Line:
      Every 36 hours a baby is born with ALD. Newborn screening costs a fraction of what caring for a child with a late diagnosis does ($3.00-$5.00 per sample vs. > $7 million per child.)

Although ALD can be identified, monitored, and successfully treated prior to the first sign of disease occurring, ALD screening is still not included in the national Recommended Universal Screening Panel (RUSP). In fact, New York is the ONLY state that screens for ALD. As of 2014, 340,000 babies were screened under Aiden’s Law, and 32 tested positive.

HOW YOU CAN MAKE A DIFFERENCE:

It’s simple: we need to create awareness, and we need supporting signatures. We need moms, dads, aunts, uncles, friends, teachers and coaches (anyone who cares about the future of our young boys) to convince decision makers—the Discretionary Advisory Committee on Heritable Disorders in Newborn Children—to add ALD to RUSP on August 27, 2015.

We are:

    • Seeking 100,000 signatures on our petition at: www.change.org/p/save-the-boys
    • Rallying online support via hashtag #SaveTheBoys to drive ALD awareness & education
    • Encouraging people to view and share our public service announcement to find out why signing our #SaveTheBoys petition is so important: http://bit.ly/1JRQ18U

6 thoughts on “Save The Boys: Sign the Petition for Adrenoleukodystrophy (ALD)”

  1. Debra K Dawson says:

    If it was your son you would want this to happen.

  2. Christie Smith says:

    Ald has affected my sons. Lost our oldest at ten, middle is blind, youngest ok but still affected by family dynamics. Every boy should be tested!!

  3. Marta Landrum says:

    This should happen. If I give birth to a boy, I will have him tested.

  4. my brother past away from this and this is the worse thing ever

  5. #savetheboys and sign this

  6. Cheryl McCann says:

    My cousin’s only child Christopher was diagnosed with ALD days after Christmas 2016. They struggle every second of every day. They had no idea prior to this that ALD existed, let alone that his wife was a carrier. It came as a complete shock. I had never heard of it either and I am shocked a disease as horrible as this one exists but is so unheard of. I’ve met Drs who haven’t heard of it ! ALD needs as much awareness as possible! No child shoukd have to suffer this, nor should any parents. My heart breaks for all effected by ALD and I continue to pray for all.

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