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Welcome to SCN2A Insights bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.

Dr. David Cunnington: And welcome to this episode of SCN2A Insights, your podcast on all things genetic epilepsy and developmental and epileptic encephalopathy. And welcome, Kris.

Ms. Kris Pierce: Thank you.

Dr. David Cunnington: So you’ve done a great job, Kris, setting up the interview for this episode, really being able to highlight carers and their needs and some of the supports available for carers.

Ms. Kris Pierce: Yeah, Cristol has a wealth of knowledge, not only does she have a personal background that lends her to be super empathetic to family members with rare conditions, but also, her professional background is having that really compassionate outlook for carers and to provide supports in a range of different ways.

So today we’re interviewing Cristol Barret O’Loughlin, who is the CEO and Founder of Angel Aid. Now, Cristol and I met last year at Global Gene Summit, and we both sit on the RARE Global Advocacy Leadership Council so we meet quite regularly as a group. And so we have that ongoing connection. But it was a real pleasure to meet you last year Cristol and just to get to know you and what you’re up to.

Cristol Barret O’Loughlin: Oh, it’s so great to finally speak with you, Kris.

Ms. Kris Pierce: So tell us about Angel Aid. What led you to setting it up?

Cristol Barret O’Loughlin: At a top-level, Angel Aid exists to provide services for caregivers in the rare disease space. I started Angel Aid back in the year 2000, actually, as a charitable organization, not a 501(c)(3). We fell under the umbrella of a specific disease group called mucopolysaccharidosis. Three of my older brothers had passed away from MPS disease at 12, 18, and 19 years old. So our original mission was to cure MPS disease, and we raised money for scientific research.

I’ve had the great privilege of witnessing our fundraising dollars go into a research grant that went on to become the FDA approved standard of treatment for some MPS children. And so young men that would have passed away in their teens have now you know, gone off to college. So it’s been an incredible journey.

And what I realized about three years ago, is that for all of our efforts to cure this one specific disease, still, 50 years later, we still do not have any cures for rare diseases. And that is an incredible challenge, burden, calling for rare families, for parents, specifically. And so we did a huge pivot on our strategy for Angel Aid and relaunched as a nonprofit focused specifically on caring for the caregivers.

Ms. Kris Pierce: Yeah, well, firstly, congratulations on that fundraising that led to treatment. That’s an amazing, amazing effort, and very rewarding as well, because it’s a very personal story for you, for your family. And I had the pleasure of meeting your mom also in San Diego, and she’s, you know, I can see where you get your passion and your desire to help people from.

Cristol Barret O’Loughlin: Absolutely, well, we have a strong belief in the Barret family that there is a purpose to the pain and the suffering that we have experienced. And that that purpose is empathy. And we know in our community, our rare disease community, that there’s just incredible love and joy and empathy that our hearts connect with each other just a little bit deeper, because of our collective challenges. And so if we can run a business that’s based on empathy, and we can bring relief to the families that we support, then we’re doing the right thing.

Ms. Kris Pierce: So that pivot that you talked about realizing that you want to switch to helping caregivers, and that’s driven by your passion and your own experience. Are there any other drivers behind that?

Cristol Barret O’Loughlin: Yeah, so we have seen really incredible support models in other types of caregiver communities. So there are really mature support models in military and veterans caregiving, for example, or in senior care around Alzheimer’s and dementia. So, this recognition of the importance of the caregiver role, literally, like basic recognition that that caregiver needs to be part of the conversation during doctor’s appointments, clinical trials, treatment applications, and not just being recognized for their role but actively engaged in the treatment and support for, for the patient.

We know that our community is 350 million families worldwide in rare diseases, and that half of those are children. So obviously, the parents are engaged, but not necessarily to the level that we would like to see in the future. And beyond just engaging the parents really deeply and recognizing really deeply the role of the caregiver, but also recognizing the financial contribution that the caregiver is making and should be honored for going forward.

So in the United States, we’re not quite as far along as even other countries like Australia and the UK, and others that have more significant stipends for caregivers and stay-at-home caregivers. So we have some catch up work to do in the United States. But that’s kind of our point of view is that there is a critical important role and it should be honored, not just with input and engagement, but also financially.

Ms. Kris Pierce: Even though in Australia, we have care payments and care, you know, there’s some financial acknowledgment. When the COVID-19 hit, there were financial packages for just about every other person apart from carers, or even, in fact, other people that they care for, people with disabilities. So it’s been a challenge, and certainly an item of discussion here in Australia or getting that recognition. And you know, it’s a piece of work that I think we all have a responsibility to keep driving forward. So I’m certainly happy that we’ve continued to connect and, you know, we can sort of work in tandem, and we can support what you’re doing.

So recently, I received a package from Angel Aid, which is a beautiful surprise. And inside it was all things to remind me, as a caregiver, to look after myself. So there were teabags and chocolates and just little things to remind me to take time out for myself as a caregiver. So what programs are you currently running to support the caregiver? I really like to hear what you’re doing at the minute?

Cristol Barret O’Loughlin: Absolutely. Oh, that just warms my heart. The program you’re talking about is our Uplifting Gifting Program. So we believe really strongly in uplifting rare families by caring for the caregiver, and 82% of the time that primary caregiver is the mother in the family. And so what we try to do is surprise and delight the mother. So we have a series of mailings throughout the year, that are focused on some sort of sensory reminder. And by sense, I mean, the five basic senses of sight, sound, scent, touch and taste. And so we’ll sit down as a team and we’ll think, “OK, what sort of sense do we want to focus on for this mailing?” And, and we’ll come up with a package.

And we’ve grown, our Uplifting Gifting Program started with 12 moms at the beginning of 2019, and we’ve grown to over 100 moms now, we’re almost to 200 on our list. So we’ve been basically doubling the size of our mailing list for this program. It is completely free. And the way that you would sign up would be to go to our website, which is angelaidcares.org, and subscribe. So if you sort of scroll down, just subscribe to our newsletter and our programs, you have obviously have to enter your mailing address, which is not typical. Most people try to hold back on information but I think if you know that this program exists, it could be a bit more of a motivator. So that’s our Uplifting Gifting Program. Shall I talk about some of the others?

Ms. Kris Pierce: I’d love to hear about them. I’m really interested. We talked briefly about it on the phone about your camp, your retreat. I’m so jealous that they’re not here because my husband and I have run retreats for sleep well– sleep wellness retreats at a highly regarded retreat here in Australia. And I always thought to myself that having these for carers would be the best thing so I’d love to hear about that.

Cristol Barret O’Loughlin: Absolutely, absolutely. Well, it’s interesting, isn’t it? So we have been running our retreats, we licensed a program called The Sustainable Mom. We’ve expanded that to The Sustainable Caregivers, so we can be a bit more inclusive. But the Sustainable Mom Program, Dr. Laura Riardon is really a specialist in bringing individuals together in the community and guiding as a group through these kinds of aha moments.

So recognition that it is difficult to be a caregiver, and that you did have a life before you were a caregiver, whether that was you know, as a single individual, or maybe before you had children, and kind of reconnecting with that sense of self with that person, as an archetype and then bringing that person through to the present day can be a really cathartic and transformational experience. Because there’s a recognition that maybe life is just a bit different than you expected, especially with the impact of a rare disease diagnosis or a set of symptoms that are undiagnosed for some families. You know, there may be some grieving, there may be some – alongside the joy, some disappointment in your role as a mother, or as a parent. Some recognition that, you know, there are beautiful moments in the day, but there are a lot of really difficult and stressful moments in the day as well.

So this program is designed to shore up a sense of resiliency within yourself. And what we’ve realized is that it works beautifully in an in-person environment. And based on the recent happenings on the globe, with the pandemic, where we’re not actually able to bring our groups together in person, it accelerated our plans to take this digital. So we always planned to bring our retreat format into a virtual retreat format, we just didn’t think we were going to do it until 2022.

Ms. Kris Pierce: Right.

Cristol Barret O’Loughlin: So we have had to really re-imagine that program. And we were so fortunate to partner with Microsoft. They adopted Angel Aid as an approved 501(c)(3) Give Program member. And that gave us access to a ton of development resources, pro bono. And so literally in six weeks, we took all of our retreat programmings, and we launched a global community.

You can access the community by going to angelaidcares.org and clicking on Join Our Community, it’s right at the top. And once you’re inside the community, you have access to a whole slew of training and self-care support experiences, including Sustainable Mom, and including our virtual retreat, which will be happening in August and September of this year. So we haven’t quite announced it yet, so I guess I’m sort of pre-announcement at this point. But there is a self-directed Sustainable Mom experience in our community right now. But we’re going to be hosting a six-week virtual retreat, as I mentioned, starting in August, where we’ll be pulling all this through. So, Kris, you can actually participate. You don’t have to wait.

Ms. Kris Pierce: I’m excited. So it will be accessible globally, will it?

Cristol Barret O’Loughlin: It will. It will. And it’s our intention… I’m so glad you brought up the global because you know with global comes to a huge responsibility around language translation as well. So our next phase with Microsoft is to start supporting our content and our workshops and our experiences in other languages. So we actually built this online portal, this community portal. We built it in a 24-hour hackathon. But what it allowed us to do was to launch Sustainable Mom in English, but also Spanish and Hindi.

So we’ve started with those two languages because we have some kind of close ties with native language speakers in those two communities. But it is our intention to broaden into 12 different languages over time. We’re going to be running another hackathon this summer in July, and start putting some of those solutions in place. So those will be automated solutions, as well as contextual because as we know, it doesn’t really much help to just take something and drop it into Google Translate, which gets you about 60% of the way there.

Ms. Kris Pierce: Yeah.

Cristol Barret O’Loughlin: You need, you know, a bit more, especially in rare disease, and especially when things get medical, which isn’t really our specialty, you know.

Ms. Kris Pierce: Yeah. We will find that, that’s really difficult getting that translation piece. So, hats off to you for really embracing that, that challenge and bringing it to the caregivers. So you talked about the online community, I just want to say, because I’ve joined that community, and there’s been some meditation, aromatherapy, so it’s a broad range of topics that you can access through the community. And I’m really enjoying being in there and part of it. So thank you.

Cristol Barret O’Loughlin: Absolutely.

Ms. Kris Pierce: So were there any other programs that you wanted to talk about? I’d really like to hear, you know, you’ve talked about some of the places that you’re going with Angel Aid, what’s your long-term vision?

Cristol Barret O’Loughlin: So we really believe in supporting the community and our definition of a community is the families and that’s where the majority of our services are focused. But part of our community is also the clinicians and the researchers that are working so hard every day, to find those treatments and cures.

And so we have quite a few corporate partners, we do corporate training programs, both internally and externally. We’re doing a program for BioMarin, for example, that’s an employee self-care program. It’s an employee sustainability program because you know, we have a lot of professionals that are also working with the families and working in kind of stressful environments and so we bring our self-care tactics and support programs to the corporate community.

And then externally, we’ve been sponsored, for instance, by Horizon to deliver seven steps to easier injections, blood draws, and IVs programs. So taking a medical experience, and incorporating our holistic health and wellness practices into that experience to bring relief. So I guess my vision is to bring relief through every platform that we possibly can.

Right now, digital is all-consuming, but we want to bring relief in the form of our health and wellness practitioner network. We want to bring relief in the form of mental health support. So it may be a digital social worker experience, telehealth and psychosocial support that is backed by a professional but has that kind of blend of eastern and western approaches to relief. So my vision is a global relief platform. Think of me as the Oprah Winfrey of relief. That’s what I would like.

Ms. Kris Pierce: You know what? And having known you really for less than a year, I don’t doubt that that’s where you’re heading. I’m super impressed by your dedication to families who just need that extra support and an extra reminder to look after themselves. So Cristol, you’ve talked about storytelling and how impactful that can be. Can you expand on that for us?

Cristol Barret O’Loughlin: Yeah, absolutely. So one of the things that we did right off the get-go of launching – relaunching Angel Aid is we partnered with Indiana University School of Social Work. And we surveyed mothers, rare mothers and we asked them, “What do you need to feel supported?”

And there were multiple things that came back. But one of the things that came back was, “I just need to know I’m not crazy. I need to hear stories of other families that are going through what I’m going through.” And we’ve realized the power of storytelling and the power of film, whether that’s in 30-second increments, 30 minutes, or, you know, a two or three hour feature-length film.

So we partnered with Disorder: The Rare Disease Film Festival and had an amazing experience last fall. We were planning on partnering with them in the spring of 2020 and had to postpone that event because of some of the happenings in the world. But we’re getting ready to launch a virtual film festival. And we’re going to do this in partnership with Microsoft in the fall of 2020. And our intention is to do two things: one, honor rare families by showing their films. And two, ignite this awareness campaign. There’s nothing like a video story to really bring the experience to life for the general public.

And that’s the pathway to more fundraising. That’s the pathway to more support. And so we just really encourage everybody out there to get your story told whether you’re telling it yourself with your iPhone, on social media, or, if you’re working with a professional film crew and creating shorts or long-form documentaries. But get your story told, it’s cathartic and it’s a critical, critical tool for us to use to affect change and support in rare diseases.

Ms. Kris Pierce: So there’s been a lot of information about Angel Aid. And we’ll put all the links to Angel Aid in the show notes for the podcast so people can find the links to your programs. But also, if there are any sponsors out there that want to support your programs, we’ll put that in there as well so they can support your work and families out there who need that extra care.

But lastly, I just wanted to finish the podcast with really essentially what we’ve talked about. We’ve talked about how caregivers of children with rare diseases need that extra assistance, so it takes up more of our time, adds more stress to our day, what are your tips for caregivers to look after themselves?

Cristol Barret O’Loughlin: I think, you know, what we hear the most is “I don’t have time for self-care.” And so I talk a lot about micro-moments a day, just taking something that you’re doing every day, and reframing it into some sort of honoring or some sort of self-care experience. And an example of that would be if you’re making a cup of coffee, or if you’re making a latte a day, take a few extra moments and really think about the ingredients that are going into that latte. So maybe you source your coffee beans from a sustainable coffee bean company, maybe you light a candle, while you’re sitting down with that hot cup of coffee in your hands.

Maybe as you’re putting your makeup on in the morning, you’re actually using some aromatherapy and rubbing between your hands and igniting your sense of smell for that two minutes, while you’re putting your makeup on in the morning. Or, you know, sitting down before you start a long workday or even the middle of the workday and just set down your phone, setting down everything in your hand and just taking a few moments to close your eyes and take three deep breaths.

Those micro-moments a day add up to you feeling much more sustained, and much more supported. And it’s not dependent on anybody else. It’s something that you can just do for yourself. And we really believe that you have to honor and sustain yourself in order to care for others.

Ms. Kris Pierce: So thank you.

Cristol Barret O’Loughlin: Absolutely.

Ms. Kris Pierce: So what were the things that you took from the interview, Dave?

Dr. David Cunnington: So I think there were two things I really liked Cristol’s point right at the end there about for carers, making sure there’s self-care or looking after yourself. I love that retreat that they run, that Angel Aid runs, you know, we got to get some of that. And I can really resonate with that because in my role as a clinician, looking after people with sleep problems, I’m often getting them to focus on self-care, because sleep may just be a byproduct of not enough self-care or being overwhelmed or not looking after themselves. So that resonated with me.

The other was the importance of storytelling. You know, we’ve managed to hold a Genetic Epilepsy Team Australia Conference, which was really successful. And that was one of the themes that came out from that, you know, your father told a really powerful story. And as well, we had Renee Swannack talked about the power of storytelling for carers to get across the messages and really convey some of the impacts that this can have on families and carers. So that was the other thing from my point of view.

Ms. Kris Pierce: Yeah, it’s really important. We often think people understand our experiences, but until we actually tell them, and as Renee said in her speech, there’s a whole range of ways of telling your story, and it’s a really important thing, not only for the individual but for the rare disease community

Dr. David Cunnington: Thanks a lot for listening to this episode. Check out our website at scn2aaustralia.org and subscribe to the podcast to keep up-to-date with all our latest information. You can also follow SCN2A Australia on Facebook or Twitter @SCN2AAustralia. Thanks a lot.

This podcast is not intended as a substitute for your own independent health professional’s advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding a medical condition.