Alyssa: Welcome back to Funding the Future, the stories behind the missions. Today I'm very excited to be joined by Penelope from the Mito Foundation. How are you, Penelope?
Penelope: I'm good. Thank you. Thanks for having me.
Alyssa: No, thanks so much. So just for background, I've had the pleasure of working with Penelope and Mito Foundation through my grant writing business, and can confidently say they're an incredibly inspiring organization with a strong focus on lived experience leadership. Penelope, in her role as Development Manager, is a really strategic leader and hugely committed to raising funds for people impacted by mitochondrial disease. So we're very excited to have you on board.
So I wondered, for the listeners, maybe we'll start with a snapshot of what is Mito Foundation and what is mitochondrial disease?
Penelope: Yes, great. It's a pretty rare disease, so it's definitely good to start with some basics. So the Mito Foundation is Australia's peak body and only body dedicated to mitochondrial disease and community research and support. So mito is a rare genetic condition. The body's cells can't produce enough energy. It affects multiple organs, essentially wherever those mitochondria are not working properly, and it's progressive, has no cures, and can be life-limiting. It can also affect any body at any age, so babies are often worse affected, dying at a very young age, and children and adults throughout their lives.
Alyssa: Yeah, pretty intense stuff. And so as sort of the peak body for Mito, you guys would work across a lot of different areas. What are sort of the key focus areas for Mito Foundation?
Penelope: So we work in the research space, funding research into primary mitochondrial disease diagnosis, treatment options, and the more foundational fundamental research as well, understanding mitochondria themselves. We also run support services, so for people with mitochondrial disease to get in touch with us in multiple different ways, from the helpline to our MitoKonnect program where people are connected with other people with mitochondrial disease. Because it is so rare, it's often that nobody else has ever heard of it when you first get diagnosed. And we also do a lot of advocacy work, both on an individual level with the NDIS and getting people access to what they need, and on more of a systems level as well.
Alyssa: Yeah, cool. So it's fairly comprehensive really.
Penelope: Yeah, we cover a lot of bases.
Alyssa: And so I guess I've interviewed a few different people now, sort of more consultants and things in the grant writing space. So I wondered if you could give us a rundown of your role as Development Manager. What are your key focus areas and what are you working across?
Penelope: Yeah, sure. So we have a pretty small team here. It's myself and a relationship manager who looks after our major donors mainly and our bequest supporters, and then we have another team member who runs our Bloody Long Walk, which is our major fundraiser and brings in most of our money actually, and is often very well known. So people would often know Bloody Long Walk more than they do the mitochondrial disease. So I work across all of the other types of fundraising. I do obviously have a grant program that I've worked with Alyssa on for a while. And then I have individual giving programs, including regular giving appeals programs. We've got always-on acquisition programs running, multiple appeals during the year. Then we have community fundraising, which is a big thing for us. The community that is connected with us do all sorts of amazing fundraisers that they come up with. And we also run some organisation-led community fundraisers like Munch for Mito, Stay in Bed Day, various things over the years where we provide people with the resources to fundraise in their community. We also have some corporate support, most recently working closely with various industry partners to support some of our community events. And what am I missing? I think that's it.
Alyssa: Yeah, pretty detailed. I remember when I started with you guys, finding out about the Bloody Long Walk and how it works. It's such a clever idea. And what a fun way to raise funds and awareness at the same time. It's awesome that you guys kind of invested in that strategy and it's really paid off.
Penelope: Absolutely, yeah, it's a fantastic fundraiser and the awareness that we get from it is pretty phenomenal as well. People join for the challenge, and it is quite a challenge at 35 kilometres, but then we get the opportunity to share what mitochondrial disease is and how it impacts people.
Alyssa: Yeah, that's really cool. What would you say inspires you most about working at Mito Foundation?
Penelope: I think it always does come down to the community. I'm always sharing stories through our appeal programs of the community's resilience. And I think what inspires me to stay is just the urgency that there is to find treatments. There are no treatments, as I said earlier, no cures, but very few effective treatments for people with this disease. So families don't have the luxury of waiting. Every dollar raised has a clear line of sight to impact, I would say, whether that's support today or research and treatments in the future. Just having that really close link with the impact and the urgency to just get it done like yesterday.
Alyssa: Yeah, that's a really good point. I remember learning about, and I'm going to say this wrong, but I think it's Leber's hereditary optic neuropathy?
Penelope: You're doing very good. It's abbreviated LHON.
Alyssa: Yes, that's right, LHON. Yeah, that's much easier. And just reading some stories about people who had discovered they had that later in life. So that's where you can lose vision as part of it, isn't it? And how scary to go potentially blind later in life and for there to be no cure for that.
Penelope: Yeah, it's really, that's one of the treatments that's coming through the pipeline actually. There's been a treatment available for a while in other countries and we're really focused on making sure that anything that's available out there in the world is then going to be available to Australians. LHON is just one of those crazy types of mitochondrial disease. And for context, I think mitochondrial disease is essentially like cancer, like the umbrella term, and it can cover so many different types of disease. So yeah, you could be a healthy 30-year-old male, have absolutely no inkling that you're going to have this disease, and all of a sudden you lose sight in one eye and then it often progresses to two eyes within the space of a couple of weeks or months. And then you're legally blind with no real options for reversing at this point, but we're getting closer.
Alyssa: Yeah, that's cool. So I guess that sort of leads into, what's a cool outcome that you guys have achieved for the Mito community more recently? That could be within your team or more broadly in the organization.
Penelope: It does definitely lead on well because I think it really is in that treatment space at the moment. We're all very focused on this clinical trials action plan that we've been working on and just really focusing all of our efforts together on making sure that all of the treatments that are in the pipeline across the world, and there has been a jump in the number of trial treatments and things that are being tested out there. I'd say we're really seeing some green shoots of the action plan come into play already and it's only the first year. So we're seeing relationships being built with international partners and industry. There were three mitochondrial disease treatments going through for FDA approval just in the last couple of months, and there are strong signals through our relationships that we're building that they are considering Australia as clinical trial sites. They're probably some of the strongest signals yet that Australians with mito will soon have access to treatments. It's a long process, but these little wins, seeing treatments available, is really exciting.
Alyssa: Yeah, that's huge. It's something I hadn't thought about so much until working with you guys, the impacts of not having the trials in your own country. You can just completely miss out. Or as you sort of say, FDA approval and things would take so much time, local approvals. If you're not part of these trials, you're missing out entirely on potential treatments.
Penelope: And with the progression of the disease as well, people just don't have that luxury of time to wait for them to be approved here. So anything that we can do to ensure people are getting access to the treatments through the trials is really important.
Alyssa: Yeah, for sure. Have there been any sort of key turning points in the history of Mito Foundation? Sort of roadblocks or things you've overcome? That could be in a funding space or just as an organization.
Penelope: There's definitely been some standout points. We had a major win a couple of years back where we were able to advocate for change in legislation for Mavis's Law, which was allowing a technique called mitochondrial donation to be trialed here in Australia as well, to limit or stop the passing on from a mother to a baby of mitochondrial disease. So if you do have a diagnosis and you know that you have the disease, this technique was available in the UK and then we worked for many years, I think around 10 years actually, of advocacy work to try to get this allowed in Australia. And there's a pilot now being undertaken in Melbourne where people will actually be able to get involved in the program and potentially have babies free from mito. So it's pretty phenomenal.
Alyssa: Wow. Is that starting now, the pilot in Melbourne?
Penelope: Don't quote me on that, but yes, they're very close to it. I think they're starting to recruit.
Alyssa: Wow. That must be an incredible feeling for people who have been desperate for children but worried about passing it on. That's phenomenal. I guess on that front, in terms of challenges, do you think in terms of raising money for Mito, what are the specific challenges you face being a rare disease organization?
Penelope: Absolutely. So I would say there is obviously low awareness, there's a small patient population in comparison to other diseases, and there is complexity. As with a lot of diseases, but when they're more known, people have a base level of understanding. So trying to explain the problem, the solution, and all of the complexities in both of those, which you could write a 30-page grant application on, but often we're trying to explain it in a 20-second reel on Instagram or in a hundred-word grant description overview. So it is incredibly difficult to distill the complexity into a palatable, understandable way.
Alyssa: Yes, and that's definitely something I felt working with you guys. And I think we also got feedback from a funder once around that. For the first few years, the grant writing itself almost becomes awareness raising, because funders go, this is the first time I'm hearing of this. And how do you deal with it when one funder sort of said they really just want to see the most number of people impacted, which becomes really complicated. The need is certainly there, but not always the numbers that bigger funders want to see.
Penelope: That's right. And we always can, I think there's a ripple effect that it's not always, doesn't always feel right to explain in the grants. But the fact is that the more we understand about mitochondria, which are part of, obviously we all have mitochondria working, we all have aging processes happening which are affecting our mitochondria, we have mitochondrial breakdown implicated in lots of different diseases — Parkinson's, dementia, all sorts of things. So we can definitely say that understanding mitochondria more will have an impact on potentially everybody, because the more that we understand how to keep our mitochondria healthy, that we can all benefit from that, as can many of the diseases that are related as well. We tend not to put that in those grant applications, and it is often a longer conversation where we explain the complexities and those connections.
Alyssa: You're so right. I almost feel like rare disease orgs should get an extra 200 words or so just to delve deeper into those kinds of things. Do you have any tips for translating the complex science of mito into applications or ways that funders can connect with it?
Penelope: I think a human story always helps if you can include that. There's not always a place for it in a grant application. I do try and I've had some success with it in the past, which I think you've probably seen as well. If you can kind of entwine the multiple human stories that this affects over a long period. So I think one example which I believe we've both used in the past is seed funding investment into a research project with a professor in Melbourne. He was a young kind of emerging scientist at the time, and we want to keep as many people in mitochondrial disease research as possible. So we seed-funded him with just $25,000, which is small in the research landscape, big for us, and big for him. But we probably wouldn't have been able to get funding otherwise. So that's your first person that's been affected early on, keeping somebody in this field that it's hard to find funding for.
And then he's gone on to prove the concept of proteomics in mitochondrial disease diagnosis. And he's gone on to run his own lab, train a whole lot of new emerging scientists in this mitochondrial disease space as well as the proteomic space.
And then that goes on to also have a real-world impact for families that we know. So there's a family that's been part of the mito community for a very long time. They've got a son that passed away from mitochondrial disease, his picture's on our wall, and he's just this adorable little kid who died when he was three years old. But it was because of the proteomics diagnosis technique that the professor that we invested in early on had developed that their family was able to then test their embryos and have a family that then did not have mitochondrial disease in the future. I think, you know, so many people were affected along the way. It's not always just the impact on the families, but the researchers, building up their community in all different aspects.
So I try to weave those stories in when I can just to make people understand that it's not just this one very complex piece of research about proteomics, because they are incredibly dry and hard to understand for most of us. So if you include those in the stories.
Alyssa: No, that's a really good point actually. I think the fact that that seed funding can then — I think a number of your researchers have then gone on to attract more funding, haven't they, from the initial grants?
Penelope: That's a very good point. Yes, $25,000 then allowed him to get, I think it was $4.6 million from the government for additional research funding. So it's just proof of concept that we're really focusing on.
Alyssa: Yeah, and it's a good point. The more people that are lost to other research projects, you want your best researchers on this, but then other fields are more attractive just because there's more funding, which complicates things. So what's the hardest dollar you feel like you've ever raised for Mito Foundation? Was it particularly tricky funders or ways you've had to be creative?
Penelope: I don't think I've got any really interesting out-of-the-box ideas. I think that it really just comes down to trust and relationships that you build over time. I think that is, if you can, the hardest dollar is that unrestricted funding. Having a funder that both has scale and the ability to invest a large amount that is really significant for us, but also trusts us to know that we're going to do what we say we're going to do, or that has the greatest need and the most strategic importance to us as an organization. So we've had some of those recently, but they're hard won, and it's a long-term process of proving ourselves as an organisation over and over again to allow them to know that they can trust us with their investment.
Alyssa: That's true. The consistency. Because I think we also had applied to one funder for several years with a no response, but still sort of encouraged to reapply. And then we did eventually end up getting a win from them, which is a real testament to being persistent. And I guess it speaks to that challenge of potentially being a rare disease org. Eventually people sort of seeing the real need and urgency.
Alyssa: Is there anything that you feel like funders need to know better or understand about rare disease orgs? Other ways that they could be more accommodating to the mission?
Penelope: I feel like there is, this movement is already happening. I feel like any talks or just being involved in the Perpetual grant rounds and things, there seems to be a movement towards trusting organizations more to do what they know best. But I think, yeah, especially with rare disease organizations, we're often small. Any unnecessary administration does become particularly burdensome. Just keeping that administration to a minimum is really helpful for us. Often fundraisers are wearing several different hats. So even just like, I think that reporting is incredibly important for all of us, but just making sure that they're not really rigid, strict forms you've got to fill out that may not be relevant. Ensuring that everything that you're asking of us is relevant is helpful.
Alyssa: That's true. Especially like you're already wearing several hats in a Development Manager role. And those reports could easily fall by the wayside. But that's a good point, easy, flexible ways for people to report things. Or ways you could double up on, send the same report to several funders to minimize the admin burden.
Penelope: Yeah, absolutely, because we're always reporting, we're always evaluating our work. So just being able to integrate what we're already doing rather than meeting their new different obligations.
Alyssa: True. Do you find as an organization, is it difficult to balance the pressure to scale and expand services with keeping quite a stable organization and not taking on too much with a small staff?
Penelope: Absolutely, yeah. So we actually recently went through a bit of a retraction phase. We're just trying to always prioritise that core impact and strategy. And it is quite easy when you're at an organisation like us. There's no one else that's doing this work here in Australia. So it would be, and has been, easy in the past to try to do everything that's asked of us. But yeah, I was really proud of our organization recently when we actually just came back to basics and said, what's really our key priority here? What's going to have the biggest impact? And pulling back those areas that we weren't necessarily reaching large amounts of people or having the impact that we wanted.
Alyssa: That's a good lesson for anyone listening. I feel like often it can feel like you're going backwards, but actually you're probably maximizing your impact by doing that, because you can do what you're already doing better.
Penelope: Yeah, trying to please everybody all the time.
Alyssa: That's true. Is that an added challenge of being community-led, that you want to be able to do more things based on community feedback?
Penelope: Yeah, absolutely. And we always want to be led by the people with lived experience. That's always going to inform our work. But yeah, just like any group, we still need to kind of streamline their requests and make sure that we're the best organization to actually meet those needs. We don't want to create any kind of overlap, try to collaborate where we can. Yeah, just make sure that we're as efficient as possible.
Alyssa: True. So if Mito Foundation was offered a million dollars in untethered funds tomorrow, what would you guys do with it? What would you be able to achieve?
Penelope: I think that it would just back our plan, which is the clinical trials action plan. And yeah, we could easily absorb a million dollars. We'd be able to fund some new coordination roles. A lot of it is the kind of unsexy behind-the-scenes work that does take a person doing relationship building over time, connecting people. A lot of it would then be able to go into research as well. So we've got some amazing research partners that we could support on a larger scale. So we do love that seed funding, but getting some money behind some clinical fellows that have the clinical trials expertise would be amazing. We could definitely improve our data and our registry collection. We could definitely ramp up our capabilities in the support services area. I think there is probably a whole space with the developments in AI where there will be solutions to our problems that we just don't have the time or money to stop and think what they could be. So an investment in our technology could see us take leaps and bounds.
Alyssa: Yeah, it's interesting. I feel like you're not the first person to say that it is often the less attractive things of an organization that the funding would go to. I think in my head, I always thought organizations often have these really big ideas, which I know you guys definitely do. But at the same time, if you're not funding those smaller things, you can't maximize your impact or you can't move forward as an organization because you just take on this wildly difficult project and then have nothing left at the end of it.
Penelope: There was a Philanthropy Australia meeting recently where Julia Gillard was talking about, I think she was doing a keynote speech, and it was all about funding the glue. So I think that's really stuck with me. I think that we are the glue. There are all different organisations doing amazing things and we're not trying to do what they do. We're not a research organisation, we're not clinicians. We do the work to keep all of those together and to keep the momentum moving. So I think a lot of the work in not-for-profits can't happen without funding the glue that keeps it all working.
Alyssa: Yeah, that's a really good point. That coordination role you guys play. If clinical trials were to come to Australia, you guys would be an important link to the community and to the research side. Definitely, the glue is a nice metaphor for that. Have you guys had any sort of grant or fundraising fails that you've learned from the most? Perhaps an unsuccessful result that you were able to leverage into a success later?
Penelope: I've not prepared an answer for that one because I can't think of a good example. I can think of, it always feels like a failure with our Perpetual grant applications because we put a lot of work into those every single week. I think maybe eight years ago we got one. But every year we miss out. We're putting everything into it, really putting our best foot forward, getting through those initial rounds. I think they're indicating that as an organization, we're good, we're sound, they're happy to fund us. Just our projects never make it through that final step, and it's just crazy infuriating once you spend all that time and effort. You've got your two applications there in your pipeline on Salesforce, $100,000, all kind of crossing your fingers. And then year after year, I think every year I've been here, eight years now. We put them in, hope for the best. They get very little feedback, so it's just frustrating. So I can't say that I've turned that into a success yet, but who knows, this might be the year.
Alyssa: That's a good point. I totally feel your pain from working on those, because I think what's really nice about the Perpetual applications is you can put in for whatever is of most urgent need for the organization. And you guys have come up with some really awesome projects. The fellowships, there was some really cutting-edge stuff, like investigating what physio looks like for managing mito. And you guys almost picked too early, because by getting the first round it gives hope. And you can't not apply as well. Very frustrating. And you do always pass the organizational checklist, you're a very sound org.
Penelope: It's paid off in the past, so we'll carry on.
Alyssa: But you never know, persistence. Are there any time-saving hacks? Given you work across many different aspects of fundraising, are there things you do in your day to day that you think have really streamlined your processes?
Penelope: It's definitely the use of generative AI these days. I think a lot of our work goes through various ChatGPTs. We've got a brand voice GPT that we all share. We've got various fundraising campaign ones, projects that we're working on. And I think it's just saved an incredible amount of time to just repurpose content and initial drafts. And I think we're only just kind of touching the surface on what is available there to create those efficiencies.
Alyssa: Yeah, that's a really nice segue. My next question was around the role you see AI playing in the future of your work at Mito. Would you say it's for the better rather than the worse? I've seen a lot online, various opinions.
Penelope: Look, I think where we're at now, we're just looking to jump on the bandwagon and try to take advantage of those efficiencies. But I'm also mindful of the way the world is going and the race to improve on that and the safety issues and everything. Look, I think, yes, net positive for now. Who knows in 10 years what that's going to be. But yeah, I think there's still a lot that we can gain from it at this point in time. Certainly administrative load has helped a lot with that. And we're running a program internally at the moment, just getting our organization literate in AI. And then the next phase is just to see what answers it can, what problems it can solve for us as well. Because I know there's a lot of organizations out there using technology to reach new audiences or provide new services. So I think there's definitely an untapped potential there for, you know, who knows what problems it could solve at this point.
Alyssa: That's cool. Does that mean you guys are going through an organizational training to get everyone up to speed?
Penelope: Yeah, I'm leading on that just to take the organisation on a journey really, just to make sure that we're all moving. I think there's always going to be early adopters and people who are playing with it regardless. Also putting those guardrails in to make sure that we're all using it ethically and safely and making sure our data is always safe. So it's good. It's a really exciting project for me personally because I love using it and I've seen so many benefits so far. And then I'm excited to get to that next stage when we're all kind of thinking in that way of what tools are out there that we could build potentially that will increase and enhance our impact.
Alyssa: Yeah, that's really cool. And it's a good point too, that there's always going to be people with varying levels of tech savviness on a team. And so it is also about bringing everyone along on that journey, so that not only your team are reaping the benefits, but the broader organization is also.
Penelope: You don't know what you don't know with AI, I think, at the moment as well. So it's really good to kind of have that conversation going constantly with everybody, learning tips and tricks. You're like, oh gosh, I didn't even know I could create a presentation like that in two seconds.
Alyssa: Yeah, true. I do find it really useful, at least from a grants perspective, writing things like support letters that are often just quite generic and can be time consuming, but you can get them done in seconds with ChatGPT. Not that you're not putting a nice personal touch into it, but it just gets you the framework really quickly.
Penelope: That's right, exactly. And I think that human judgment staying central is really important, and certainly what we're always keeping in mind. Moving forward with AI, it's like let's just make sure that there's always human oversight and human judgment involved.
Alyssa: That's true. It's just your starting point, isn't it? And then sort of needs refining. What gives you hope about the future of impact-driven work for not-for-profits? I know we often look at the downside or the challenges that not-for-profits face, but it's nice to also look at some of the positives.
Penelope: Yeah, and I think going back to what I was talking about earlier, the Philanthropy Australia talks, I feel like funders and the philanthropy sector in general is definitely maturing to a point where they can trust organisations to do the work that we're setting out to do. Really understanding the complexity and funding the glue and changing some of those power dynamics. I feel like it's a wonderful field that is maturing and I see that the impact sector will benefit from that in the long run.
Alyssa: True, that's a really nice point. I know that you guys have probably seen the Pay What It Takes report from Social Ventures Australia. That's kind of been circulating and it's really exciting. I think especially when you have to justify really strongly the administrative spend often, but yeah, it's nice to see some advocacy for administrative expenses to be covered.
Penelope: Exactly, that's another great example which is giving me lots of hope actually.
Alyssa: Yeah, it is an exciting time in terms of philanthropy. Well, we have been very efficient, but I just have a rapid fire three questions to close out our time. Can you give me one word to describe fundraising or grant writing?
Penelope: Relational.
Alyssa: I like that. What's the most underrated skill in not-for-profit work?
Penelope: Prioritization.
Alyssa: That's a good point, absolutely. We all struggle with that one. And do you have a not-for-profit hero? Someone, it could be an organization or an individual.
Penelope: I don't actually have one. I think that there are many and I've just kind of described what they are to me. That's organisations that consistently pair lived experience with rigour, and leaders who protect mission over ego.
Alyssa: I like that.
Penelope: So I think that includes Mito Foundation. I think our leaders definitely do that mission-over-ego part and the lived experience and rigour all together. But there's lots of other, probably because I'm in this space, I see a lot of other small rare disease organizations doing the same thing.
Alyssa: Yeah, true. Mission over ego. I think that's really well said.
Penelope: It's certainly not the case with all not-for-profit leaders or leaders in general.
Alyssa: Yeah, that's true. It becomes tricky, doesn't it? It kind of gets melded together sometimes. But yeah, well, thank you so much for your time. It's so great to get your insights and I know it's always busy. So I appreciate you joining the podcast.
Penelope: Well, it's been wonderful. Thank you for having me.
Alyssa: Thank you. And I will just close out by saying the podcast is powered by GrantDrafter, helping organizations to draft their next grant in five minutes or less. If you haven't already, for those listening, check out the GrantDrafter website at grantdrafter.com. And for those listening, we hope you're feeling inspired to get out there and maximise your impact.