Everyone who meets Damian is instantly smitten with him. My 2-year-old is truly an angel on earth – sweet, smiley, social, and has recently started cupping his cheeks with his hands to form the cutest smile you’ve ever seen!
Damian was also recently diagnosed with a devastatingly fatal disease called Acid Sphingomyelinase Deficiency (ASMD), also referred to as Niemann-Pick Disease Types A & B (NPA & NPB). Damian’s case appears to be a mild form of Type A, the most severe form of the disease, which is characterized by an early onset (infancy) of progressive systemic manifestations such as:
· an enlarged liver and spleen
· loss of muscle tone
· failure to thrive
· rapid neurodegeneration (think baby Alzheimer’s) that leads to death typically by 3 years of age
Since Damian’s case is mild, he has a greater chance of living past 3 years old. However, any neurological damage that Damian incurs likely can’t be reversed, and if nothing is done to stop or slow the progression of his disease, he will likely die before his 5th birthday.
WE NEED YOUR HELP TO SAVE DAMIAN
Two potentially promising treatments are on the horizon, but funding is desperately needed to speed up the timeline and clear the pathway to a clinical trial. With your help, collectively we have a chance to save Damian’s life.
Please, help me save my precious boy. Please #SaveDamian.
Whether or not you are able to donate, please spread the word and share this campaign with others. Thank you, thank you, thank you. <3
Brittany (Damian's Mom) and Brock (Damian’s Dad)
HOW YOU CAN HELP TODAY
1. Donate what you can, no amount too small (donations are tax deductible)
2. Share on all social media with the hashtag #SaveDamian
3. Email our GoFundMe and these steps to all contacts
4. Leverage any avenue you have to make this go viral (or send me leads/tips)!
- TIP! - DOUBLE YOUR DONATION
Many employers are set up to match contributions their employees make to any 501(c)3 non-profit charity, so please check with your HR manager as it could double your donation!
WHERE THE MONEY IS GOING
All contributions are tax deductible and go to the Wylder Nation Foundation, a 501(c)3 non-profit organization (Tax ID: 46-2849095) who has been funding this research that can give Damian a shot at life. 100% of the funds raised here will go directly to fast-tracking this research and what is needed to initiate a clinical trial.
The research includes a unique small molecule that passes the blood brain barrier (BBB) and has demonstrated remarkable results at potentially slowing or stopping the rapid course of neurodegeneration that happens in NPA. Additional research is surrounding a gene therapy that has the potential to replace the defective gene responsible for Damian’s disease with a functioning working copy of the gene for a more permanent treatment.
THERE IS A CLEAR PATH TO TREATMENT
1. Manufacture clinical grade drug production
2. Final safety studies
3. Get FDA approval to proceed with clinical drug
4. Start clinical trial
If you would like to donate by check, please make the check out to:
Wylder Nation Foundation (in memo write #SaveDamian)
Wylder Nation Foundation
8924 E. Pinnacle Peak Rd
Scottsdale, AZ 85255