Is silence compliance?
I have grown a lot over the 10 years since Jonah’s diagnosis, but I still feel like a kid. I’m hungry to learn and experience new things. Like a little baby, wide eyed soaking it all in, touching everything, sucking on life hoping to learn something from the taste and texture. It’s not possible to discover what you want to learn in a single lifetime. I’ve always been impressed by kids that knew what they wanted to be when they grew up and followed through with their aspirations. I was never drawn to any one particular vocation. Why did I have to choose just one career? There is so much to do, so many possibilities. As life would have it, I didn’t have to choose, my job chose me. It quite literally chose me, Jonah landed right in my lap. Now I have more jobs than I know what to do with.
Math, science and public speaking were never my strong suit. I was terrified of public speaking, I don’t like people looking at me, judging me. A propensity for math and science, chemistry in particular never came to me. I admire the people I work with, they worked hard to earn their doctorate and medical degrees. I have never felt worthy of being in their league, I feel guilty, it’s imposter syndrome. For the most part this feeling of inferiority is on me, my colleagues have never treated me as inferior to them. Quite the opposite, they have embraced me and lifted me up. Who I am has rarely been held against me by others in this space. I feel good about who I have become and I look forward to all the new things that I will continue to learn. I have finally settled into my job; it’s not so intimidating anymore, and I actually find it exciting.
Writing NIH grants is a talent, not only do you have to have a worthy proposal, you also have to compile a grant in such a way to meet the specific and strict standards of the NIH. These processing rules are not self-explanatory. There are a lot of fine print requirements, the formatting of the grant is somewhat of a test in itself. The application process is harder than the science; easy for me to say, I’m not actually working in the lab. Last grant round we submitted three grants, they go to review in November, yesterday we got word that one of the grants was rejected without review.
My contribution to the team is my firsthand connection to the patients and intimate understanding of the disease. I realize now that what I bring to the table is invaluable. My life experience is also the basis of my imposter syndrome, I don’t have a medical or science degree and it weighs on me. My biosketch was written by my former CEO, I thought Sean did a nice job of presenting my strengths and value to the team. Our grant was removed from review because my biosketch contained a hyperlink to this very blog.
The grant rules include a clause that hyperlinks are not allowed in the grant due to security reasons. The clause says this https://nexus.od.nih.gov/all/2019/05/13/the-dos-donts-of-hyperlinks-in-grant-%20applications/
At the end of the day, risk avoidance may be the most convincing reason to avoid unrequested hyperlinks. NIH may withdraw your application from consideration if you include them. Don’t risk it. Write a compelling, self-contained grant application and let it speak for itself.
This is good advice and I wish I would have taken it. However, I don’t think it’s fair to say that a biosketch is part of the scientific portion of the grant application. To me a biosketch is a supporting document not the grant. The grant was exceptional, if I do say so myself, we will resubmit without the hyperlinks in January.
The response from the NIH to our rebuttal for disqualifying our grant for a hyperlink gave me pause, the wording of the rejection letter was ambiguous. It could just be that pesky imposter syndrome sneaking up on me. Out of fear of retribution I will refrain from writing what it said. Was it the hyperlink and fear of malware that concerned the NIH or is it that I write a personal blog which was seen as a breach of security? Had a reviewer read my blog in the past and was uncomfortable with something that I said? From one vague line of reasoning in the rejection letter I got the sense that someone held bias against personal blogs. If the shoe was on the other foot, I might see me as a liability too. It’s really hard to not judge someone by what they write. I know that employees of the NIH have read my blog. I was invited to speak at an NIH workshop in part to what the organizers read in my blog. The whole thing has put a bad taste in my brain, and I hope after writing about it I can put it behind me.
My first reaction was to delete my blog, I have always feared that my blog would come back to haunt me. At the end of the day I keep the blog to face my fears, testing my convictions gives me strength. Swallowing my pride and putting myself out there has proved to be my most valuable skill set.
My biggest fear is that I will not be able to fund our clinical trial and I will have failed all the families that have hope because I told them they could. I believe in our science I believe that with the approval of our gene therapy program and newborn screening that we will save the next generation of children. I can’t promise that we will be able to save this generation of children, because I can’t promise that we will have the funding to complete our research. Funding is the only thing that stands in our way. Once my company creates a treatment for Sanfilippo, I hope to be able to reinvest drug proceeds into research for other rare diseases. No parent should ever have to hear: “your child has a terminal rare disease and there is no treatment.”
I have so much conviction of seeing this through that I have turned my life and my family’s life into a constant state of financial and emotional flux. Thursday- after listening to the presidential debate, I actually asked myself, would I give up winning these grants to see Trump out of the White House? What is more important to me, Trump out of the picture? Or immediate funding to treat our Sanfilippo children?
I’m aware that I’m making an egregious social media faux pas for speaking my mind about Trump. My son’s life is on the line and I need funding from any political party to help save our Sanfilippo children. Here is where my moral convictions come into play. I do believe that silence is compliance and I can’t silently stand by and watch Trump mock everything that I hold so dearly. My son has ‘bad genes’ that he got from me and my husband, which caused him profound brain damage. Jonah will need assisted care for the rest of his life. Where do children like Jonah fit into a Trump dynasty? I know Trump sees my child as weak and a failure, not worth tax-payer dollars. I know it because I have seen him in action, I don’t have to read is raving tweets to know that he’s a maniacal and unconscionable person that cannot be trusted.
If we’re able to get Jonah a treatment in time, I’ll be able to halt the progression of the disease and he’ll most likely outlive Jeremy and I. Jonah doesn’t have any siblings to look after him when we’re gone. I’ll have to trust our government to meet his needs.
Please think of Jonah and all the other vulnerable children when you cast your vote. Do you believe that Donald Trump has the best interest of the vulnerable and less fortunate at heart? Actions speak louder than words, I think this is true. People don’t always mean what they say, and their words are sometimes misunderstood or taken out of context. However, a person’s actions tell the truth.
One more favor, I’d greatly appreciate it if you would post this video on your social media platforms, in hopes that it will go viral and raise awareness for Sanfilippo syndrome and funds for a treatment. https://www.gofundme.com/f/saveconnor If you’re not comfortable with clicking a hyperlink you can google SaveConnor.com
Happy Halloween!
JW
#SaveConnor = #SaveJonah
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| Luck is in the eye of the beholder. |
