109. Creating a Nonprofit to Support the Causes that Matter Most to You with Hannah Lowe Corman
Summary
What does it mean to suddenly identify with a group you never thought you’d become part of - and how to begin turning those challenges into opportunities for greater communal consciousness?
Erica and India are joined by Hannah Lowe Corman, co-founder, and president of L-CMD Research Foundation. According to Hannah, 7,000 diseases currently classify as rare, meaning fewer than 200,000 cases recorded in the US. Her son, Austin, is one of those affected.
Hannah shares the ways in which Austin’s reality has shaped her allyship both with families navigating rare diseases as well as with fellow members of Pause On The Play The Community.
In this discussion:
About LMNA-related congenital muscular dystrophy
Navigating the logistical aspects of setting up a non-profit
Humanizing foundations
Exploring the energetic ties that bind communities and inspire action
Riding the “bar graph of emotional capacity”
Reframing mission statements to purpose statements
Resources for vetting and giving to non-profit organizations
Keep The Dialogue Going
Visit pauseontheplay.com/community for details about our latest workshops and information on how you can join us.
Learn more about LMNA-related congenital muscular dystrophy and give if you can at lcmdresearch.org.
Activate Amazon Smile on your Amazon app! Every time you shop, Amazon donates to your favorite organization at no additional cost to you.
Article
Community is the foundational theme here at POTP; it's the engine that drives meaningful, lasting change. Erica and India welcome Hannah Lowe Corman to discuss her community-based experiences, motivated by creating, participating in, and amplifying connections for the greater good. Driven to start a nonprofit when they felt most alone, Hannah and her husband built a community from the ground up. We're often compelled to donate our time, resources, or other collateral to an organization but, ultimately, feel disconnected from its humanity. Hannah shares her nonprofit's origin story as well as ways everyone can deepen their community connections.
Meet Hannah Lowe Corman
Hannah is co-founder and president of L-CMD Research Foundation, a nonprofit she established after her son was diagnosed with congenital muscular dystrophy. The organization urgently translates scientific research and treatments to find a cure for this rare and ultimately fatal childhood disease.
Hannah's also an independent artist and a yoga teacher, living and working in Houston, TX, with Mark, her husband and foundation co-founder, and their two sons. In what seems like a previous life, she was a healthcare banker, helping nonprofit healthcare institutions (think hospitals, long-term care facilities, clinics) with their financial needs. That experience would prove helpful when it came time to establish the L-CMD Research Foundation. "You have no idea how many things in my life have somehow set me up for exactly where I am," she explains.
Hannah's well-known here at POTP; she's an active member of The Community, our hub of entrepreneurs and changemakers connecting at the intersection of values and visibility. In The Community onboarding process, for example, every participant is guided through the process of selecting a cause to sponsor. Hannah decided on one in healthcare and one in the arts. The former is in keeping with her close ties to that field; she comes from a family of doctors and nurses and continued to volunteer in healthcare even after she left banking. The latter speaks to her passion: making sure others have the opportunity to stay creative.
Humanizing A Rare Disease
Throughout her life, Hannah has gravitated toward communities that contribute to the greater good. "As fate would have it, I guess, here we are," she says. By "here," she means head of the L-CMD Research Foundation, founded after Austin, her youngest, was diagnosed with LMNA-related congenital muscular dystrophy. Austin's illness results from a mutation in the LMNA gene, a random occurrence in nature rather than a genetic condition. Early on, neither Hannah nor her husband had any reason for concern regarding their son's health. He was a typical baby. "He had issues, but all sorts of things that people kind of assured us are within the realm of normal, or he would work his way out of it."
Genetic testing, however, revealed the gene mutation. As a result, Austin cannot sit, stand, or walk and he will continue to weaken throughout his life until he can no longer move. Children with this disease typically begin experiencing heart complications between the ages of eight and ten years old. Life expectancy is statistically less than 18 years. There are so few known cases, however, that little data exists to provide families with a definitive timeline or trajectory.
"It's kind of just a waiting game," Hannah says, adding, "I think it's a situation that one does not even fathom could happen to them." And yet, stories of families struggling to make sense of a rare disease or catastrophic illness are not at all uncommon. "My natural reaction, at least prior to this, was like, 'Oh, that could never happen to me,'" she says, even after having spent so much time in healthcare-related communities.
"I think in a lot of cases, it seems like this very removed thing," Erica says. "And so, the humanizing of it, I do think, can sometimes make people kind of pause and think a little differently. And I want to acknowledge that you could have very easily said, 'Well, I don't know what's going to happen, so I'm not doing anything else. I'm not going to care about anything else. I'm simply going to go into a bubble with my child, and the rest of the world can just kind of buzz off. I don't care.'"
"Yeah. And we did do that for a while, for sure," Hannah admits, an understandable instinct for anyone presented with such a devastating diagnosis. Thousands of families face similar situations. "There are something like 7,000 rare diseases, and rare disease is defined as having fewer than 200,000 cases in the United States. This disease, L-CMD, there's 200 kids in the world that we know of." Inequalities inherent to healthcare options for underrepresented and marginalized people, coupled with a lack of access to genetic testing, could very well mean that those numbers are much higher. Individually, these rare diseases may not affect vast numbers (as defined). Collectively, the impact on patients and their families has prompted the founding of Rare Disease Day, a worldwide event created to raise awareness among the general public.
Prioritizing research funds for rare diseases is an arduous process. Since embarking on this journey, Hannah's become intimately aware of how costly medical research is - and the cruel reality of profit margins. "The companies that typically do that, such as pharmaceutical companies or biotech companies, you know, they're gonna make the choices that make the most economic sense for them, right? So they're going to work on the diseases that have the biggest populations because if they can create a drug or something to treat that group, that's going to be much more profitable than something that's going to treat 200 people."
Market forces dictate that those affected by rare diseases secure much of the financial backing on their own in addition to advocating for themselves, "to say we want somebody to work on this because just 'cause so few people have it doesn't mean it's not important."
Hannah co-founded her nonprofit to respond to this lack of medical funding and support her newfound community. "A nonprofit is for the greater good, right? So L-CMD Research Foundation is not for Austin," she says, "we're doing it because of him, but it's to advance the research on behalf of the whole patient population."
Creating A Nonprofit
Before The Community members choose an organization to support, they’re urged to follow that cause’s money trail. That’s by design. "Sometimes people don't always know how much has gone into having to create this entity," Erica says, inviting Hannah to share some details around setting up the L-CMD Research Foundation.
The lengthy process began with an application for tax-exempt status. L-CMD Research Foundation was created under IRS code 501(c)(3), officially designating it as a nonprofit, free from paying federal income tax. The status also means that folks who make a charitable contribution also receive a tax deduction, a perk the government extends to incentivize people to lend financial support to organizations.
As with anything having to do with the IRS, the process of securing 501(c)(3) status can be a bit opaque. Once all of the documentation is submitted, "it's wait and wait and wait some more," Hannah says. For six months or longer. Even more frustrating? The IRS sends its approval letters out via snail mail. No email, not even an archaic fax. "The whole thing is very labor-intensive," she confirms. After nonprofits receive their IRS letter, there's another approval hurdle to jump: GuideStar. GuideStar allows the general public to fact-check nonprofit profiles, from contributions to salaries to spending to tax documents. "You basically have to be in GuideStar's database for the world to consider you a nonprofit, even though you've gotten your IRS letter."
With IRS and GuideStar approval finally in hand, the L-CMD Research Foundation set up their profile on Amazon Smile, a function within the shopping site's app and its website. Amazon Smile allows individuals to automatically donate to the charity of their choice with every purchase - without added expense to the consumer. Hannah urges everyone to turn on Amazon Smile within the app to take advantage of its funding power. "It's not like you're being charged extra," she says. "It's not money out of the customer's pocket. It's just money that Amazon then donates."
"I did not know all of these things that you had to do in this long process," Erica says, acknowledging that even with all of Hannah's parental duties, foundation responsibilities, pandemic concerns, and multiple natural disasters in her home state, Hannah has continued to expand her imperfect allyship, and participate in The Community.
"And then, on top of all of that," India adds, "you know, for those that are not in the space to see firsthand, you show up, and you're really supportive of all the members [in The Community], and you've offered to provide any guidance if they decide that they want to create their own nonprofit. I mean, there's just a lot that I'm like, you're officially Wonder Woman!"
"That's very nice. And that's not true," Hannah demurs. "Something that I learned right at the beginning of this whole journey was, I went to a support group and the person speaking was talking about how all of us have a limited capacity just to live life, and then also to support other people. And, when you're confronted with a shocking situation or a grieving situation or just something going on in life, you might be maxed out of your capacity, and you just might be operating on survival mode for a long stretch of time. And that was comforting to me...I can just be in survival mode, and that's okay."
Capacity And Community Connection
Minding her energy levels has allowed Hannah to engage, or not, without experiencing overwhelm. "[I] notice when 'Oh, okay, like, today is a good day. Today feels easier; today's a day I could hop in The Community and comment on everyone's posts and absorb them and give feedback and not be consumed with my own day-to-day,’" she says.
"The beauty of being in a community space is that everybody's capacity of their capacity doesn't have to be the same at all times," Erica says. "And so, you kind of have that room to be like, 'Okay, I do have this, and this is where I am right now,' where, for somebody else, they might be running on fumes. And when it's a day that you're like, 'I have nothing for anyone kind of outside of my household,' other people may be running with extra capacity to kind of share. And I think that there's sometimes a lot of validity in recognizing where we operate as a unit in ways that we don't even always recognize."
"I think there's something very elegant about that," Hannah agrees. "And, I like to think that we're all connected, right, like the whole world, and we have this communal consciousness or whatever. And so it's like, if one part over here isn't working well, over here, it probably is working well. And like, how can we balance that out or support one another, right?"
"We're talking about something that I feel like is important, and it's bigger than self," Erica points out. "And, with a lot of the things that have been happening recently, focusing on something bigger than itself has given me the opportunity to work on my own capacity at the moment. So thank you, Hannah, for that.”
Being "In Action"
India asks Hannah to share a "must-know" with the POTP audience about being an ally or supporting and facilitating change, specifically with LMNA-related congenital muscular dystrophy.
"What I've found for myself as being part of the community and also somebody who has needed the support as well as been able to maybe give some support, hopefully, is that I've been trying to find areas that feel like I can make progress in," Hannah says. “Erica, you're always talking about being in action, and I think that every day or week or month or year, there's the potential to take actions in so many different ways. That, for me, it's almost like finding the way that feels best aligned right now, and trying to focus and not feel overwhelmed by all the things that need to get done and all the ways in which I need to learn and practice, but finding bites to work on on a continuous basis."
Hannah provides an example from her L-CMD Research Foundation experience. "We very mindfully decided that we were going to call our purpose “our purpose” and not our mission statement," she says, pointing to long conversations within The Community about language usage.
"When I first heard someone bring up the fact that a mission statement can be triggering to some folks because of, like, the colonialist history and overtones, at first, I thought, well, you know, it's become so much more than that at this point in our life. A mission statement of a nonprofit is just, like, a thing; it's a thing that you're supposed to have, right?" Throughout its creation, she wondered, "Who am I to say no? I'm not going to call it a mission statement when, like, the world says it's called a mission statement?"
The more she considered the term's connotations, however, Hannah thought why not use different terminology? "We can call it the purpose, and that is a valid term, and it might not be the standard term these days, but maybe it will be one day. And, so, we're happy to move in that direction and draw attention to the fact that that's important to us to try to just be mindful of the language we're using and we're not gonna get it right all the time, of course, but we just gotta keep being aware and trying our best."
On the receiving end, the intricacies of caring for a child with a rare disease are complicated. "Austin's mind is very bright, but his body is wasting away. So, it's very physical for us as his caretakers," she says. "I think I saw someone's tweet the other day. I don't know who it is, so I can't attribute it, but it said something like, I think it might be harder to get a new wheelchair in the U.S. than it is to get a gun."
The quote draws attention to the behind-the-scenes hoops caregivers must jump through each day. "You might see a person in a wheelchair and just have no idea everything that goes into that person's life apart from just what you see," Hannah says. "I like to be an open book. I will not get offended; whatever anybody wants to ask me about anything is totally fine. I think it's better to just share as much as possible, so people know what's up and it doesn't feel uncomfortable. It just is what it is. And I'm happy to be the teacher if that's what somebody wants."
As for what POTP audience members can do to start making changes, Hannah offers one simple step. "Learn as much as you can and find actions that work now, in this moment in your life and take those. And then hopefully tomorrow there'll be another one, et cetera, et cetera."
For their part, Erica and India couldn't let the conversation end without once again thanking Hannah for her emotional transparency and introducing the POTP audience to L-CMD Research Foundation.
Quoted
Hannah Lowe Corman
“All of us have a limited capacity just to live life... when you're confronted with a shocking situation or a grieving situation or just something going on in life, you might be maxed out of your capacity, and you just might be operating in survival mode for a long stretch of time.”
“I think that every day or week or month or year, there's the potential to take actions in so many different ways.”
"Learn as much as you can and find actions that work now, in this moment in your life and take those. And then hopefully tomorrow there'll be another one, et cetera, et cetera."
Erica Courdae
“There’s sometimes a lot of validity in recognizing where we operate as a unit in ways that we don't even always recognize.”
Guest Contact & Bio
Hannah Lowe Corman is the co-founder and president of the L-CMD Research Foundation, which she helped establish in order to urgently translate scientific research into treatments and ultimately a cure for this fatal childhood disease. She is also an independent artist and yoga teacher living and working in Houston, Texas with her husband and two sons. In what seems like a prior life, she was a healthcare banker helping nonprofit healthcare institutions obtain financing.