I am so grateful this morning. In the first 48 hours of our campaign launch, you have helped me raise over $45,000. Not only that, but my Facebook and Instagram have exploded with notifications of people sharing Damian's story with friends and family and coworkers. I'm very quickly becoming unable to respond to every message or personally thank everyone for sharing our story, but PLEASE know that I see you and cannot thank you enough!
People are wonderful. And you are my favorite people. I am so grateful.
As we're standing at the start of this road, I have been spending every ounce of the day strategizing. $500K is a big number, and it really is just the first hurdle. All in, we need to raise a roughly estimated $3 million to fund the development of the gene therapy treatment. And in my personal opinion, if we raise more I think it stands to reason that it could be ready faster (more funds means being able to hire more people on the research and manufacturing teams, etc.)
I've started having regular calls with the Wylder Nation Foundation, and I'm doing all I can to get up to speed on what the status is on treatment development. The medical research and pharmaceutical fields are such colossal industries, and I'm learning much more than I ever thought I would about what it takes to get a drug created.
The great news (as I understand it**) is that it seems that the science is practically there - the scientists know which gene mutation is causing the problem and the basics of how to fix it. That is already worlds beyond the development of treatments for other diseases. The hurdles are like I said in our campaign video - funding and public awareness. Drug companies, the ones who take the scientists' "recipes" and actually make the drugs, simply don't have the incentive to create a department in their company to manufacture a drug for a rare disease that no one has heard about. Is it worth the risk of going through the trial and error phase to create it? Will it make their stocks go up? Cancer treatment is in high demand and is obviously commercially worth a pharmaceutical company's efforts. COVID-19 vaccines, of course, affect literally everyone. But... Acid Sphingomyelinase Deficiency? Who cares?
I. CARE. And I believe I speak for all the thousands or perhaps tens of thousands of mothers who have lost their babies and toddlers to this destructive disease, who have to live the rest of their lives missing their child and have to use highly-expensive methods for future pregnancies or risk the cycle happening again, when I say that manufacturing a drug for a treatable disease is worth our time and money! Especially when the science and data is already right there!
I'm so determined to make an incentive for these companies. We are going to make this a hot topic. We are going to make this something companies will be glad to be a part of. And I truly believe this is achievable! If every person in Los Angeles County (my home) donated just one dollar, we'd likely have enough to save Damian and every baby after him who is born with this disease. Doesn't that just make this sound... easy??
I know it won't be easy. But my beautiful Damian alone would be (and is) worth all of this effort. So to think that this would benefit not just him but all the babies... Why wouldn't we nip this in the bud right now??
Treatment is within reach. And I promise Damian, God, and all of you, that I am going to do everything in my power to get it done in time to #SaveDamian. Whatever it takes.
** Please remember that I am not a doctor. I am not a scientist. I do not speak on behalf of the Wylder Nation Foundation. I am a concerned and an overtly tenacious mother trying to make sense of an industry I do not understand in order to save my son's life as quickly as possible. If I get something wrong in any of my blog posts, please know it is an honest mistake and I will correct myself as I learn.
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