Decision Vision Episode 167: Should I Apply for Grants? – An Interview with Jill Wood, Phoenix Nest, Inc.
Jill Wood, Co-Founder and CEO of Phoenix Nest, Inc., and Co-Founder of Jonah’s Just Begun- Foundation to Cure Sanfilippo, Inc., gave an overview of the process of applying for grants. She and her husband started the foundation when their son was diagnosed with Sanfilippo, Type C. With host Mike Blake, she covered the basics of applying for grants, becoming a “citizen scientist” to understand the science, where to begin, the need for help from consultants and grant writers, the strict requirements, timelines, and much more.
Phoenix Nest, Inc.
Phoenix Nest was founded by an alliance of parents with children suffering from Sanfilippo syndrome type C.
Our management team has a built-in sense of urgency and limitless determination to bring a treatment to the families affected by Sanfilippo syndrome to market. Phoenix Nest is the proud recipient of several Small Business Innovation Research grants from the National Institute of Health. Through funding from the NIH, we have been able to facilitate the research in academic labs and licensed these programs. With support from our Independent Scientific Advisory Board and Board of Directors, we have thus far successfully met the challenges of pioneering treatments for these ultra-rare and untreatable diseases.
Jonah’s Just Begun – Foundation to Cure Sanfilippo, Inc.
Jonah’s Just Begun-Foundation to Cure Sanfilippo Inc. is a 501(c)3. The foundation raises funds then distributes them to academic research groups focused on finding treatments for Sanfilippo Syndrome, MPS III.
JJB was formed in 2011 after parents Jill Wood and Jeremy Weishaar after their son Jonah was diagnosed with Sanfilippo Type C. Jonah’s astute pediatrician, Dr. Hai Cao MD (South Slope Pediatrics), suggested that Jonah receives an MRI based on his abnormally large head size. Jonah’s Neurologist, Dr. Romaine Schubert (New York Methodist), concurred. At the time of diagnosis, Jonah was 22 months old and asymptomatic. Upon learning that their child had a fatal genetic disease that had no treatment, Jill and Jeremy received some advice from Jonah’s Geneticist, Dr. Karen David, also from New York Methodist. Dr. David told Jonah’s Parents to make a treatment happen. It was this advice that spawned JJB.
Jill and Jeremy hit the ground running, locating the world’s few scientists that were working on Sanfilippo, and seeking the support of like-minded parents. JJB brought these parents, scientists, and clinicians to New York for a patient population in May of 2011, just one year after Jonah’s diagnosis. Together they identified the three most promising approaches to a treatment. The parents went home filled with hope and began their grassroots fundraising efforts. The scientists went back to their labs, inspired by the parents.
Today there are half a dozen Sanfilippo research projects in progress and a knockout mouse model. Jonah’s Just Begun works hand in hand with other International and US type C Medical Research Foundation, we call this consortium HAND.
Jill Wood, Co-Founder, Chief Executive Officer, Co-Founder, Phoenix Nest and Jonah’s Just Begun – Foundation to Cure Sanfilippo, Inc. and Chief Executive Officer
Jill Wood Co-Founded Jonah’s Just Begun-Foundation to Cure Sanfilippo (JJB) with her husband in May of 2010. After their son Jonah was diagnosed with the ultra-rare genetic disease, Sanfilippo Syndrome type C. JJB’s mission was to foster a treatment for Sanfilippo Syndrome type C; by connecting researchers, funding science, and mobilizing the patient population.
JJB revenue came through grassroots fundraising efforts, small grants, and private donors. Funding was then distributed to researchers through grants made by JJB. Grassroots fundraising provided the seed money to initiate pre-clinical research but was far from what was needed to develop, test, and manufacture a drug. Jill founded Phoenix Nest (PN), a for-profit bespoke biotech in 2012. PN licensed the programs that JJB kickstarted, which allowed PN to apply for National Institute of Health (NIH) Small Business Innovation Research grants (SBIR/STTR). PN won its first SBIR grant in 2012, the start of a series of grants totaling $10,750,320.
The funding has allowed PN to bring one of its treatments almost entirely through its pre-IND studies and has funded a clinical observational study, still ongoing.
Mike Blake, Brady Ware & Company
Michael Blake is the host of the Decision Vision podcast series and a Director of Brady Ware & Company. Mike specializes in the valuation of intellectual property-driven firms, such as software firms, aerospace firms, and professional services firms, most frequently in the capacity as a transaction advisor, helping clients obtain great outcomes from complex transaction opportunities. He is also a specialist in the appraisal of intellectual properties as stand-alone assets, such as software, trade secrets, and patents.
Mike has been a full-time business appraiser for 13 years with public accounting firms, boutique business appraisal firms, and an owner of his own firm. Prior to that, he spent 8 years in venture capital and investment banking, including transactions in the U.S., Israel, Russia, Ukraine, and Belarus.
Brady Ware & Company
Brady Ware & Company is a regional full-service accounting and advisory firm which helps businesses and entrepreneurs make visions a reality. Brady Ware services clients nationally from its offices in Alpharetta, GA; Columbus and Dayton, OH; and Richmond, IN. The firm is growth-minded, committed to the regions in which they operate, and most importantly, they make significant investments in their people and service offerings to meet the changing financial needs of those they are privileged to serve. The firm is dedicated to providing results that make a difference for its clients.
Decision Vision Podcast Series
Decision Vision is a podcast covering topics and issues facing small business owners and connecting them with solutions from leading experts. This series is presented by Brady Ware & Company. If you are a decision-maker for a small business, we’d love to hear from you. Contact us at email@example.com and make sure to listen to every Thursday to the Decision Vision podcast.
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Intro: [00:00:02] Welcome to Decision Vision, a podcast series focusing on critical business decisions. Brought to you by Brady Ware and Company. Brady Ware is a regional, full-service accounting and advisory firm that helps businesses and entrepreneurs make visions a reality.
Mike Blake: [00:00:21] Welcome to Decision Vision, a podcast giving you, the listener, clear vision to make great decisions. In each episode, we discuss the process of decision making on a different topic from the business owners’ or executives’ perspective. We aren’t necessarily telling you what to do, but we can put you in a position to make an informed decision on your own and understand when you might need help along the way.
Mike Blake: [00:00:43] My name is Mike Blake, and I’m your host for today’s program. I’m a director at Brady Ware and Company, a full-service accounting firm based in Dayton, Ohio, with offices in Dayton; Columbus, Ohio; Richmond, Indiana; and Alpharetta, Georgia. I am Managing Partner of the Strategic Valuation and Advisory Services Practice, which brings clarity to the most important strategic decisions that business owners and executives face by presenting them with factual evidence for such decisions. Brady Ware is sponsoring this podcast.
Mike Blake: [00:01:12] If you would like to engage with me on social media with my Chart of the Day and other content, I’m on LinkedIn as myself and @unblakeable on Facebook, Twitter, Clubhouse, and Instagram. I also recently launched a new LinkedIn Group called Unblakeable’s Group That Doesn’t Suck, so please join that as well if you would like to engage.
Mike Blake: [00:01:30] Today’s topic is, Should I apply for grants? According to data from Foundation Center, there are over 86,000 grant making entities in the United States with 92 percent represented by independent foundations. According to the Instrumental Blog, there are 26 grant making agencies in the federal government. And corporations represent 17 percent of all non-government grant funding, according to Grant Station.
Mike Blake: [00:01:57] And I wanted to cover this topic separately from the discussion that we have with Lauren Cascio a couple of weeks ago on non-dilutive funding, because I do believe that grant making is its own animal. And, in fact, I don’t know that most people appreciate just how big the grant sector is in the United States, and how central the grant making sector is to supporting certain kinds of business, in particular biotechnology.
Mike Blake: [00:02:33] There’s a rule of thumb that says it takes about $100 million to get from molecule to market. And a lot of that early stage funding when you’re in that molecule phase and you’re not even sure that the molecule does anything useful yet, you’re trying to prove that (A) it might do something useful and then determine if it’s going to kill the person that you’re trying to cure. That’s what they call preclinical and phase one in clinical trials.
Mike Blake: [00:03:03] But to get to that point, that’s usually not done through venture investing. Sometimes it is, but it’s actually usually accomplished through some form of grants. And, indeed, I think this is something that my profession and the world of corporate finance has to come to grips with and really make a fundamental adjustment in how we value companies.
Mike Blake: [00:03:33] And I’m going to get a little bit technical here on that, because I think it’s really important, and then we’re going to get to the actual topic because you want to hear my guest, not me. But for those of you who are finance geeks out there – and I know that you’re out there because you send me you send me messages and emails – when we look at cost of capital to figure out the hurdle rate for a project, or a discount rate on an investment, or required rate of return, conventional wisdom says that we consider the cost of equity and the cost of debt financing, which is all well and good.
Mike Blake: [00:04:08] But conventional wisdom ignores non-dilutive financing. That is financing that has no cost of capital. There is no expectation that it’s going to generate a financial return to the investor. And, accordingly, I think that leads to a lot of companies, frankly, being undervalued – at least by people who do what I do – and explains, at least in part, some of the gap that exists between sort of academic finance and practical finance. So, I’ll put out a white paper on that. I’m not going to discuss that anymore because it really would make for a lousy podcast.
Mike Blake: [00:04:43] So, let’s go to the part that makes for a good podcast. And joining us today is Jill Wood, who co-founded Jonah’s Just Begun – Foundation to Cure Sanfilippo with her husband in May of 2010 after their son Jonah was diagnosed with the ultra rare genetic disease, Sanfilippo Syndrome Type C. Their mission was to foster treatment for Sanfilippo Syndrome Type C by connecting researchers, funding science, and mobilizing the patient population.
Mike Blake: [00:05:12] The revenue came through Grassroots Fundraising efforts, small grants, and private donors. Funding was then distributed to researchers through grants made by the foundation. Grassroots Fundraising provided the seed money to initiate pre-clinical research, but was far from what was needed to develop tests and manufacture a drug.
Mike Blake: [00:05:31] So, Jill then founded Phoenix Nest, a for-profit bespoke biotech in 2012. Phoenix Nest licensed the programs that the foundation kickstarted, which allowed them to apply for National Institute of Health, Small Business Innovation Research Grants. They won their first SBIR grant in 2012, the start of a series of grants totaling nearly $11 million. That funding has allowed Phoenix Nest to bring one of its treatments almost entirely through its pre-clinical studies and funded a clinical observation study which is still ongoing. Jill Wood, welcome to the Decision Vision podcast.
Jill Wood: [00:06:09] Thank you, Mike. Thanks for having me here.
Mike Blake: [00:06:13] So, let’s educate our audience first. We’ll talk about grants in a second. But what you do is so important and I also want to get into your origin story because I think it’s just amazing, candidly. I’m not sucking up to you. I truly believe that. What is Sanfilippo Syndrome? And so, you and I had spoken, I never heard of it, to be perfectly candid.
Jill Wood: [00:06:34] Yeah. Very few people have heard of it, and that’s one of the major problems with diagnosing this disease. So, Sanfilippo Syndrome is part of the umbrella group of syndromes called mucopolysaccaridosis, which is MPS for short. There are seven forms of MPS, and Sanfilippo Syndrome is MPS III, which breaks down to another four syndromes, MPS III A, B, C and D, or you can call it Sanfilippo Syndrome A, B, C, and D. I don’t know why they have to make this stuff so complicated, but that’s what it is.
Jill Wood: [00:07:16] So, my son, Jonah, was diagnosed with Sanfilippo Syndrome Type C about a year into his first year of life. We were really very lucky, for lack of better words, we lived in New York where we are surrounded by some really great institution, health care hospitals, who our pediatrician recognized that something was off with Jonah. And it was basically the head size, his head circumference, which a normal pediatrician would sweep under the rug, like no big deal. You know, if they’re Polish, they all have big heads, you know.
Jill Wood: [00:07:57] But he sent us over to a neurologist and that neurologists took a hard look at Jonah and saw some other things. And they sent us to an MRI that was done at NYU. And, luckily for us, the techs saw in Jonah’s brain deformities or lesions. The deformity was a skull deformity that’s pointed towards mucopolysaccharidosis. So, we were able to zero in right away into what diagnostic testing we needed to do for Jonah.
Jill Wood: [00:08:42] So, Sanfilippo Syndrome, it’s a genetic disease that has a mutation on one of the chromosomes. And a husband and a wife have a 25 percent chance of giving both of those bad genes to their child. And so, Jonah has a defect on his gene that stops an enzyme from forming. And that enzyme’s job is to break down a protein called heparan sulfate. And because that enzyme is not there or lacking, it doesn’t break down that protein. And the protein sits in the cell in every single cell.
Jill Wood: [00:09:26] This is called a lysosomal storage disease. There are numerous lysosomal storage disease out there. Gaucher, Fabry are some of the more popular ones that people might recognize. So, anyways, you could imagine what this storage must do to your cells that’s not supposed to be there, right? It has catastrophic effects. It starts with near degenerative progressive disease, a lot of behavioral issues. The symptoms are really quite diverse and it’s very hard to pick up because a lot of it in the early diagnosis is hyperactivity.
Jill Wood: [00:10:08] So, you have a two year old that’s extremely hyper. The two year old with a large head that’s extremely hyper. Then, what really sets people off to search is their speech delays and not keeping up with their peers. A lot of times, if they have older brothers, siblings, they’re like, “They’re just not like his older brother Johnny. You know, this is not the way he developed.” And so, they start on that odyssey of getting the diagnosis, and they usually get diagnosed as in the autism spectrum disorders until they start regressing.
Mike Blake: [00:10:47] And in the regression, they’ll start to lose their speech, their ability to walk, their ability to eat on their own, and they succumb to death between the ages of 10 to 30, really, depending on the severity of the syndrome.
Mike Blake: [00:11:04] So, at the time your son was diagnosed, were you already a biologist? Were you already a trained pharmaceutical researcher? What was your background?
Jill Wood: [00:11:16] No. Everybody always asks me that, Mike. They call us citizen scientist, is the term that came out. No. I was in the fashion industry. I think what gave me the ability to do what I’ve done is just being able to talk to people, not being shy. And it’s okay to not understand. And going after people and making those connections is one of my strong suits.
Mike Blake: [00:11:49] You know, and I think just aside from the story, being remarkable that you’re undertaking that challenge and you really just pivoted your life to pursue this, you’ve gone from that point to raising over $11 million of grant money. Which tells me – and I mean, this in no disrespect to you and in any way diminish your accomplishment – that you don’t necessarily have to be a “insider” to raise grant money. You don’t necessarily have to have lived that entire life, you’re part of a secret club, or anything, that there is a process, that if you muster that process, then grant money is achievable.
Jill Wood: [00:12:33] Yeah. But, Mike, I do think they were shocked. I think the people that released the funds when they talk to me that first round and they asked me who I was and what kind of financial setup I had, they were shocked. I could hear them gasp on the other line.
Jill Wood: [00:12:56] I would be curious to know how many other parents have started out. And since I’ve started doing this and telling my story – you know, the NIH brings me out all the time to campus to speak – and since I’ve started this, many families, many parents said, “Okay. I can do this too.” So, I know there’s been an uptick in that, but I would be curious to know.
Mike Blake: [00:13:19] So, walk through your first grant, if you can remember that. What was that like? How did you approach it? Was it successful?
Jill Wood: [00:13:34] You know, it took a couple of times, a couple of rounds to have our first successful grant. Obviously, I did not do this grant writing on my own. You do need to have a medical degree or a PhD – actually, you don’t. I mean, you could really educate yourself up to that point. But if you want to expedite the situation, you should probably bring some consultants in.
Jill Wood: [00:13:57] And so, I did have my colleague, my co-founder, was a PhD, and he had NIH grants under his belt. He inspired me and said, “Let’s do this.” I have really great researchers that I work with. We had preclinical work. We had efficacy. And we really had what was needed to start writing grants. So, he helped me put together our first grant application.
Jill Wood: [00:14:27] And to go back, so my major funding comes from the National Institute of Health, NINDS, as I mentioned, the Small Business Innovation Research Grants. To get these fundings, to start up, even able to apply, is a major undertaking. You can’t just go and log in and sign yourself up. There are several different agencies that you have to go through. The dance number, your cage code, all these steps that you have to go and be certified for. So, anyways, that could take you four to six months. So, if you’re going to do this, you’ve got to get started.
Jill Wood: [00:15:14] There’s very little cost that’s involved in starting up, though. I think there might just be a couple of fees, but, anyhow, it’s inexpensive to do, so – go ahead.
Mike Blake: [00:15:25] Please go ahead. No. Go ahead, please.
Jill Wood: [00:15:26] Okay. So, my researchers, with these small business grants, usually it’s a requirement. You’re working with an academic, and that academic worked with my grant writer, and we put together a strategy. There is a format to these grants. And I suggest you read the instructions over and over and over again. And you don’t throw anything in there that you think is really great. You need to follow what the FOA asks you to do.
Mike Blake: [00:16:04] FOA stands for what?
Jill Wood: [00:16:08] You put me on the spot there, and you’re going to come up –
Mike Blake: [00:16:12] I’ll look it up.
Jill Wood: [00:16:13] Yeah. Thanks. Look it up. You can call for grant FOA.
Mike Blake: [00:16:23] Funding Opportunity Announcement.
Jill Wood: [00:16:25] Thank you. There it is.
Mike Blake: [00:16:26] You’re such an expert, you’re so in it, it’s hard for you to get back to the [inaudible].
Jill Wood: [00:16:33] I was impressed that it came up with SBIR. So, anyways, you follow what the FOA is asking. And if you don’t, that is your first rejection. They’ll kick it right back at you. The NIH is not messing around. I once had a grant kicked back to me because there was a hyperlink in the page within the body of a CV. That was kicked back to me. I’ve had grants kicked back because we went over the page limit. I mean, you don’t even get reviewed. They kick it back and you can’t reapply for another six months.
Jill Wood: [00:17:13] So, you really got to take these things very, very seriously. Have other people take another eyeball on it, pass it over. I mean, bio sketches have to be in the form of an NIH bio sketch. Anyhow, so our first grants we applied had really great comments. We did not win. But you take those comments, and you take them seriously, and you go back and you address them. And you could have a chance, within time you can go and address those before your grant will go to committee for final review. But most often you have to reapply to the grant funding opportunities, which usually happen every six months.
Mike Blake: [00:18:04] Now, you’ve also received other grants from non-governmental organizations as well, correct?
Jill Wood: [00:18:14] Correct.
Mike Blake: [00:18:15] So, I guess I’m curious, why are they giving away money? I understand and our listeners will understand, government agencies, in a way, it’s sort of their job. But there are these private foundations, individuals, I guess, corporate entities, and so forth, what do you think kind of makes them tick?
Jill Wood: [00:18:39] Obviously, breast cancer awareness, you can see how that got started, because it affected people and maybe affected loved ones. A wealthy entrepreneur out there may have had a grandchild with a rare disease and somebody on a staff started up a foundation, because they want to help and maybe they don’t have the time or the resources to do what I’ve done.
Jill Wood: [00:19:11] And I’m sorry I keep regressing here, but I’m thinking back to the science. What was there ten years ago is here now. Alzheimer’s is a really good example. You know, that is a disease that’s only recently had treatments and it’s been known for 70 years. You can look that one up, Mike, as well. But some of these ultra rare diseases are easy fixes where a single gene defect and the science is finally here. You know, CRISPR gene therapy, it’s just opened up the world to us.
Jill Wood: [00:19:53] So, I’m going back to make my point is that, these large foundations that have been there for so long, they had to fund a lot of science to get to where they’re at now. I think we’re going to be seeing a lot more treatments coming out in the next couple of decades with the recent discoveries that we’ve had. So, yes, I think they have a connection. They have a connection to the community.
Mike Blake: [00:20:23] So, I’m not sure if the way to ask this question have you think back or maybe just if you’re going to start today. But, you know, I’m sure somebody who’s listening to this podcast is thinking this out, “You know, I’ve been thinking about getting a grant and this conversation with Jill is giving me the confidence to give this a shot.” Where do you start? How do you start figuring out what might be a potential source of grant money?
Jill Wood: [00:20:53] Well, you’re going to want to look at the institutions or the smaller nonprofits that are in your space. And NIH was obvious to me. But if you might have an education grants, you can go for the Department of Education. Department of Defense is a really good, huge funding opportunity. So, look within your space.
Mike Blake: [00:21:20] I imagine a lot of this can be just accomplished by Google Search, right? Because I think some organizations are very private, they don’t necessarily want a solicitation at large, but then there are some that do. But one thing I’ve read, and I’m curious if you agree with or have any experience with this, is that, it might be easier to obtain money from a smaller organization than a larger one simply because they may not have as many applicants. Any comment on that?
Jill Wood: [00:21:55] No offense, Mike, finding those is pretty dang tough. So, we can go on a tangent here, maybe there’s foundations. So, in my space you’ll have a foundation that supports MPS, but they support MPS as in the families, getting help to the families, and getting families to where they need to be. And I’m looking for foundations that are willing to fund research to bring a treatment.
Jill Wood: [00:22:30] The smaller ones are hard, I think, to find unless you know them because they’re in your space and then you have a link to them. But the larger foundations, you know, everybody always says, “Did you go for a Zuckerberg grant? Have you talked to Bill Gates?” It’s always the first thing out of people’s mouths. And it’s like, “Those are the people that are inundated with grant applications.”
Jill Wood: [00:22:56] You know, you really need to have an in, you need to have somebody you can talk to, a name, and ask for advice, what are people looking for, what’s the tone of this grant. And a lot of times you’ll look at the FOAs and it’s like, “I don’t even know they’re so all over the place.” Nothing has really zeroed in and there’s so many different ones. It’s really convoluted.
Jill Wood: [00:23:24] So, you start out doing that because that’s what everybody tells you to do. But I turned around and just walked away from it because it was all misses. You know, you could spend a lot of time putting things together and it’s just not what they’re looking for. But they don’t really tell you what they’re looking for. And the goalposts are changing all the time, whichever way the wind blows, what’s the sexy right here that I’m funding.
Mike Blake: [00:23:52] You know, the interesting thing about what you just described, I think, is that a lot of people who have had to raise venture capital would offer a very similar description. You’ve got to have an in and you’re not really sure what they want. The VCs aren’t sure what they want. It’s sort of like trying to define the difference between art and pornography. They don’t know. They can’t define exactly where it is, but they know it when they see it. And so, you get bouncing around saying, “Well, no. I’m really not into this. But maybe if you do this, I’ll take another look.”
Jill Wood: [00:24:26] And I don’t know about you, but I know that at least on the VC side of it, the funding seeker side, that can just be immensely frustrating, because it’s hard to tell the difference between being tasked to do something with a specific objective versus just sort of being frankly jerked around.
Jill Wood: [00:24:46] Yeah. Exactly. Yeah.
Mike Blake: [00:24:49] So, in your experience, what does the timeline look like for applying to a grant? I’m curious, is it fairly quick? Is it lengthy? Is it variable? What’s your experience with that?
Jill Wood: [00:25:04] It’s all lengthy. From small to large, it’s all lengthy. I mean, small operations don’t have as many people onboard looking at it. They want to vet the application. So, it might take more time to find the right eyes to look at the application. And then, large institutions, you think they’re large, but the NIH, I feel like they don’t have enough employees, The FDA, they don’t have enough employees. And there’s a lot to go through as well. So, they’re about six months rotation. And if you have a government shutdown, it’s all over, and it happens all the time.
Mike Blake: [00:25:49] When that happens, do you basically have to start over or is it sort of extended animation?
Jill Wood: [00:25:53] No. We just sit in limbo. We sit in limbo. You know, it’s happened to me a couple of times during the Obama Administration, where towards the end we had shutdowns every other day. And it was between we had won the grant and now we’re waiting for the funds to release. Well, the funds aren’t being released because nobody’s made their decision on how much funds are being released. They’re all squabbling there. So, yeah, you sit down for another three months. It’s extremely frustrating. I mean, you think you got the funds, but it could take you a year to actually get them.
Jill Wood: [00:26:33] And I should preface that, too, maybe this is obvious to most people, but maybe not. Those funds don’t hit your bank account. They’re sitting up there in the cloud somewhere – we call it the Payment Management System – and you only pull down funds when you’re paying an invoice.
Mike Blake: [00:26:51] Oh, that’s interesting. I didn’t know that and I’ll bet our listeners didn’t know that. How does that impact your operations as you try to operate your company?
Jill Wood: [00:27:02] Mike, it’s really hard. I was laughing, I could tell you all the horror stories behind this. So, you know, you have to budget so fine tuned. You need to know every penny. And when those invoices are coming, a lot of these grants are milestone driven. If you don’t get to your milestones, your grants can be frozen. If you have a researcher that changes positions or you have to move to a different site, your grant is frozen. And if you’re in between a funding cycle and they only release fundings at certain points, it’s frozen, then you have to get permission to release it, and then here the funds come another six months.
Jill Wood: [00:27:58] So, you can’t get ahead of yourself. You can’t ever overcommit. You really need to be prepared for those things to happen because it is inevitable. They will happen. And if you are living from paycheck to paycheck, it can crush you.
Mike Blake: [00:28:19] And I’m guessing also it probably creates a vendor management challenge, too.
Jill Wood: [00:28:25] Yes, it is. Yeah. I always go in. And a lot of these vendors, believe it or not, even though the money is there, they don’t take on uber rare projects. You know, it’s like $1,000,000 actually means nothing to them. You know, patient population with 15 patients, I’ve had vendors have turned me down because my projects are too small. So, you get these good ones that want to work with you, that understand the situation, and they realize this is what’s happening, but we’re going to do the right thing. And I’ve had several of those vendors.
Jill Wood: [00:29:06] But, yeah, I work with one company that has been incredibly patient where that exact same thing happened. My grant got waylaid and I owed them hundreds of thousands of dollars, and they sat there for six months. And they continued to work, they kept on working until the funds were released. But I couldn’t sleep at night. I do not like living like this.
Mike Blake: [00:29:30] No, of course. I guess, on the bright side, I have to imagine if you provide those services or vendors provide, for example, clinical research organizations, that kind of thing, many of their clients are in your position. And so, my guess, if they’re smart, is that their business model already foresees the fact that there may be a six month delay between invoicing and being paid simply because that’s the nature of the beast.
Jill Wood: [00:30:05] Yeah. It’s like the venture capitalist, you know, they’re taking a little bit of a risk helping you out.
Mike Blake: [00:30:15] So, let’s go to the NIH, because I think that’s obviously a big source for you. How important has it been to develop a personal relationship with people at the NIH? And if that was important, how did that happen?
Jill Wood: [00:30:38] You know, they have to be very careful. There cannot be any favoritism there. You can’t take these guys out for lunch or buy them a drink. That is not appropriate. And if you’re in this space, it’s a small fishbowl. And I was fortunate enough where my grant funding came from the NINDS. And there’s a representative, our program manager that runs in the same circle – her name is actually the same as mine – who I just got to know her. And she really understood the science. She understood the disease. And so, when the grant application came through, it hit her desk. We already had the rapport. She knew the people that I work with.
Jill Wood: [00:31:27] But she’s not the one who’s making the decisions on reviews. You know, when your grant goes in, she gives it to the right people. But you never see your reviewers. They give you a list of their names, but you actually don’t know which ones are looking at your grant. And it is a major no-no to ever contact these reviewers. Don’t ever say anything to them. And it’s those guys that are making the decisions on giving you the score. And those guys can tear you apart if their idea does not fit with yours.
Jill Wood: [00:32:07] But the grant managers, how they can really help you is fight for you. When they do see something that is not in sync with the guidelines, they can call a reviewer out and say, “Hey, you know, this was an unjust comment.” During those times when grant funding freezes, they can help you find other ways to get bridge funding. So, my program managers are priceless. I do have a really great relationship with them. And they are extremely helpful, and networking, and giving ideas.
Mike Blake: [00:32:46] So, you’ve indicated that you’ve in the past, and perhaps you still do, have relied on the help of outside consultants and advisors to help you prepare grants. And I’ve read the same thing, like many organizations have internal grant writers because it’s such a specialized skill. If you’re going to apply for grants such as the ones that you’ve received, how much should somebody budget in terms of the cost of applying for this “free money,” which isn’t so free?
Jill Wood: [00:33:19] It’s not free. Oh, geez. You know, I think it could probably cost you, it depends, like, are you going to hire these people and keep them on staff. That’s where I always worry about. They need to not only have the gift of writing, they need to understand your disease too. And so, it’s hard to find a consultant out there that’s going to be able to nail both of them. So, I would suggest hiring somebody and then you’re going to give them a full salary, which you want to Google it, $100,000 to 300,000.
Jill Wood: [00:34:02] If you are going to piecemeal it, I just think you get what you pay for. You’re not going to get quality work out – maybe you will, maybe you can find somebody – just saying, “Here’s my package, put it together.” I would say that probably costs you at least $10,000.
Mike Blake: [00:34:23] Have you had grant applications rejected?
Jill Wood: [00:34:27] Oh, all the time nonstop. This one grant goes to cancel May 18th. And we are sitting on the edge of our seats. We got a really great score. And that grant has gone through three times. This is its fourth time.
Mike Blake: [00:34:48] It’s fourth time being submitted?
Jill Wood: [00:34:50] Fourth time being submitted.
Mike Blake: [00:34:52] And you’re hopeful that the fourth time is the charm?
Jill Wood: [00:34:55] Yeah.
Mike Blake: [00:34:56] Okay. So, actually this is one of my questions, I was curious if you’re able to apply for grants more than once. That sounds like you are. That may even be expected.
Jill Wood: [00:35:07] Yeah. So, you’ll get your comments, and you’re not always going to have the same reviewers. And sometimes you get lucky with a reviewer that knows exactly what it is that you’re trying to convey and get across, they’ve been in this space. They’re in your space. These people are in your space. They have understanding of the disease. And then, you’ll have somebody who is like, “No. That is not the route of administration I would suggest. No.” “F.” They score you for, like, one to eight, one being good, eight all the way across. So, it’s some egos in there.
Mike Blake: [00:35:44] So, is it fair to say there’s a certain amount of luck involved? Do I get the right application in front of the right reviewer on the right day in the right mood?
Jill Wood: [00:35:55] Yeah. I think with all honesty, Mike, yes. Because we’ve resubmitted it and gotten way different comments from the previous round, so it’s extremely frustrating.
Mike Blake: [00:36:13] Now, when you receive a grant – we touched upon this in terms of how money is dispersed – what other things do you have to change about your business or build your business around in order to manage the grant? Because my understanding is when there’s a grant, there’s just usually some sort of reporting function to send to the granting organization to verify, basically, that you took the money, you didn’t go to Atlantic City and put it all in 22 black. So, what does that look like?
Jill Wood: [00:36:43] It’s hard. And that was really scary for me. And I found there’s niche companies out there that specialize in managing your funds and helping you with the accounting. Yes, there will be line item budgets for travel, for equipment, for subcontracts, yadda yadda. And you get your F&A portion of it and your fee. There’s a lot of calculation that goes into these. It’s epic. It’s quite a lot of work. And your invoices all need to be properly coded.
Jill Wood: [00:37:22] So, all that goes into – I use this company and I’ll pitch them because I think they’re fabulous – Jameson, is my company that does that for me. But I take the invoices and I code them. They manage all the backend of it for me. And then, when you hit a milestone, it’s 750,000 in funding, you’re audited. It triggers an audit. And so, these guys come in, they’re certified by the NIH, and they come in and they look at all your books and make sure you spend down to the time cards, to every single sub-award, seeing the contracts, knowing how you vetted these different contracts. It’s pretty intense and it’s extremely intimidating.
Jill Wood: [00:38:14] So, I strongly suggest you bring somebody in to help you with that. Academia, who wins a lot of these kind of grants, they have entire departments that manage this. They manage the researchers grants for them. But I did not. And so, I found a company that could manage it for me.
Mike Blake: [00:38:38] So, I’m curious, does that also mean that you have to – I’m guessing – kind of approach accounting in a separate and kind of a different way? Some companies, frankly, can be pretty loosey goosey about accounting. And if all you’re doing is you’re running a business selling peat moss out of the back of your truck, you can do that. But it sounds like for you, you probably effectively need at least a controller, if not an outright CFO, and maybe even a whole separate kind of firm even to sell off on it to make sure that you’re doing what you need to do. Because I’m guessing that’s the kind of thing where a misstep can destroy a relationship forever.
Jill Wood: [00:39:24] Yeah. So, yeah, that’s why I depend on this company, and I really want to make sure. This was a portion that I did not know. There’s always that behind the scenes stuff, and this was one of them, is the reporting of the funds, how you spend the funds. I mean, there’s stipulations on how much funds you can roll over to the next accounting period. If you come up short in one budget item and over in the other one, how much you can reallocate to different areas. You know, it’s really detailed.
Mike Blake: [00:40:05] I’m talking with Jill Wood. And the topic is, Should I apply for grants? With the time we have left one question I want to get your thoughts on here is, who shouldn’t apply for grants? I’m sure you’ve probably talked to people that have asked, you know, “Hey, this sounds great. I want to get some of this free money to do X, Y, and Z.” Have you ever talked somebody out of applying for grants or can you see a scenario under which you might talk somebody out of applying for grants? Because for whatever reason, they’re not wired for it, they’re not appropriate, not the right space. Hopefully, you get my question there.
Jill Wood: [00:40:46] Yeah. I would say not in the right space. This is not free money. Because free means it’s my time. This is a massive amount of work that you’re doing to managing these grants. So, if you think you’re going to get free money, who’s going to manage that money for you? That’s not free. So, it would be the person that I would talk out of it.
Jill Wood: [00:41:14] Like, I know where I’m at. And I only have one child. I live in New York. I have access to a large infrastructure, lots of consultants at my fingertips. I don’t want to pick on anybody, but Arkansas did not have the infrastructure that I do and have more than one child, four kids, maybe two, very sick. It’s too much. It’s too much work. I know how hard it is.
Jill Wood: [00:41:52] And you’re not just managing grants. You’re also managing your research. You’re managing the companies. You’re managing your vendors. You’re trying to understand where to go to next, the NIH, the whole landscape. You have to quit your job. And if you’re taking care of multiple sick children, that’s too much. I ask myself all the time, “Is it worth it?”
Mike Blake: [00:42:20] And I imagine it must feel sometimes like you’re working for your granting organizations.
Jill Wood: [00:42:27] Yeah. I do. I really do. I would say that’s a good portion of my time is to make sure all my books are in order, that I’m making all my milestones, planning ahead so that I’ll get the funding when my milestones are met. Yeah. It’s a lot of juggling.
Mike Blake: [00:42:52] So, one way to potentially approach applying for grants is to basically put out as many applications as you possibly can, sort of a shotgun approach as opposed to being surgical. I think I know what the answer is going to be. That’s okay. But I’m sure somebody has tried that. Is that a viable strategy or do you really have to be zeroed in and decide and bet on organizations?
Jill Wood: [00:43:20] If you have nothing better to do, if you have nothing else to lose, you could sit around and write. I mean, some of these grants are small, but some of them are 30 pages. And you’re also wasting other people’s time. If you’re not serious about your grant writing, you’re wasting other people’s time because you have to go and get quotes from all your CROs. Maybe you need to rent a space. Maybe you need to hire other people. You have to get letters of support. There’s a lot that goes into this.
Jill Wood: [00:43:54] So, that would make me mad if you did that, because you are wasting a lot of people’s time, and you are wasting reviewer’s precious time by putting something in their face that’s just worthless. So, be focused.
Mike Blake: [00:44:17] What are the most common reasons that a grant is rejected in your mind?
Jill Wood: [00:44:23] Mistake.
Mike Blake: [00:44:26] Yeah?
Jill Wood: [00:44:27] Yeah.
Mike Blake: [00:44:28] Just like a factual error or –
Jill Wood: [00:44:30] A mistake. A hyperlink, too many pages, you didn’t follow the format. This was supposed to be ten pages, you know. Or in the mistake that you missed the concept, the FOA, you misunderstood it. You should really talk to the grant managers before you apply and say, “Are my aims, does this fall under what the reviewers are expecting?”
Mike Blake: [00:45:02] Jill, we’re running out of time and there are probably questions that our listeners would have liked me to have asked, but didn’t, or would have liked us to spend more time on, or maybe they just want to find out more about Sanfilippo Syndrome and how they can help. If somebody would like to contact you, can they? And if so, what’s the best way to do that?
Jill Wood: [00:45:24] You can contact me directly at my email address. If you have a place to put that, it’s in the blog text or in a text somewhere under my bio, it’s firstname.lastname@example.org.
Mike Blake: [00:45:41] Very good. That’s going to wrap it up for today’s program. And I’d like to thank Jill Wood so much for sharing her expertise with us.
Mike Blake: [00:45:48] We’ll be exploring a new topic each week, so please tune in so that when you’re faced with your next business decision, you have clear vision when making it. If you enjoy these podcasts, please consider leaving a review with your favorite podcast aggregator. It helps people find us so that we can help them.
Mike Blake: [00:46:05] If you would like to engage with me on social media with my Chart of the Day and other content, I’m on LinkedIn as myself and @unblakeable on Facebook, Twitter, Clubhouse, and Instagram. Also, check out my new LinkedIn Group called Unblakeable’s Group That Doesn’t Suck. Once again, this is Mike Blake. Our sponsor is Brady Ware and Company. And this has been the Decision Vision podcast.