Wednesday, January 22, 2014

Let's Beat the $H!T out of ACD

= a public service announcement / shameless plug / letter from my heart to yours =

the fatal condition that took noah's life was Alveolar Capillary Dysplasia, or ACD. right now there have only been about 200 cases worldwide reported which makes ACD a "rare disorder." not much is known about this disease, but thankfully there is research being done. 

NORD, or National Organization for Rare Disorders, is a 501c3 organization dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them, like the Alveolar Capillary Dysplasia Association, which we are a part of. 

NORD is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research and service. one way they do this is through their Research Grant Program which provides seed money in small grants to academic scientists studying new treatments or diagnostics for rare diseases. 

it's almost that time of year that NORD issues the request for proposals for new research projects. in order to be included, the Alveolar Capillary Dysplasia Restricted Research Fund must have $33,500 by march 1st. as of december 31st, the fund totaled $17,840. so we're about half way there!

research through the NORD's grant process does two things: 1) the request for proposal publicizes ACD in the medical community, and 2) research brings us closer to non-invasive diagnostics, more information, treatment, and a cure. research is greatly needed and we invite you to be a part of it.

it is super easy to make a tax deductible donation to the ACD restricted fund at NORD. just click on this link and be sure to choose Alveolar Capillary Dysplasia (ACD) from the "Research Fund" pull down menu. 

ACD makes me unbelievably angry. losing my son for such an insane reason as one little messed up chromosome makes me so angry ... there are no words. i'm paralyzed with an anger that has nowhere to go.

there's not much i can do, as a mother, for a son wrongfully in heaven - to make it right. but i can do this. i can, with my dollars and cents, scream at ACD to "GET THE HELL OUT OF HERE!"

obviously all of this is incredibly personal to me and way, way more than just asking for money.

thank you for reading this ridiculously long post.

thank you for loving our boy and honoring him by saving the lives of others.

with eagerness to beat the $H!T out of ACD...

noah's mama


  1. Please meet my friends....

    1. i'm familiar with fallon's story through the ACD community. very inspired and thankful for all their work to raise research funds. they're amazing.