Congrats again to the 10 winners of our 2019 DiabetesMine Patient Voices Contest, announced earlier this summer, who will attend our annual Fall Innovation Days on full scholarship! Over the next several weeks, we'll be featuring an interview with each, sharing their personal stories and POVs on the impact diabetes technology is having on all of us.
First up, meet a fabulous D-Mom from Indiana named Lisa Oberndorfer, whose now college-age son Will was diagnosed as a pre-teen. Five years ago, she founded her own nonprofit org offering financial assistance to young people with diabetes and their families in need, lovingly named Diabetes Will's Way. This organization has already given out over $120,000 in grants in 35+ states.
We're happy to introduce Lisa here today.
Talking Help and Hope with Diabetes Mom Lisa Oberndorfer
DM) Hi Lisa! Can you please begin by sharing how diabetes first came into your family's life?
LO) Will was diagnosed at age 13 in seventh grade, which was back in 2012. It took us by surprise. He's the youngest of our three kids. We didn't have any type 1 history in the family, so it was something we'd just never thought about, considered, or knew anything about. Luckily, the diagnosis came prior to him going into DKA or anything. Will was in and out of the hospital fairly quickly, and they released him -- much like they do -- without much information, telling you the scary parts and sending you out into the world to live life.
So it was pretty much learn-as-you-go each day, for your family?
Fortunately for us (though I'm not really sure how I feel about it more broadly), we have a large contingent of T1 families here in Central Indiana. They quickly reached out to us and gave us the support and community we needed to deal with this new life, what I call the "new normal." Will adjusted well and at 13, could take over most of his own care with minimal supervision. We looked over him and his routine as parents, but he wanted to be the one in charge -- of his life, his body, his disease. As long as it was working and his numbers were where they needed to be and he was managing, we went with it and allowed him to have the lion's share of control.
How did the T1D diagnosis impact his attitude, at that critical stage of entering the teen years?
We did notice the change after he was released from the hospital... he wasn't the same happy-go-lucky, carefree child that he'd used to be.
That was true until the day we were driving to see another family with a little boy much younger than Will, about 6 years younger. This was about three months after Will's diagnosis. We were getting the boys together to just meet someone else who was living this lifestyle. Primarily, their little boy wanted to see what a teenager with type 1 looked like. He was having a hard time envisioning what life would be like and what he'd be able to do when he reached those teenage years, and Will was going to be that person for him.
So we were driving over there, and it was the first time I noticed since his hospital release that he was happy, laughing, talking, smiling. I looked at him and said, "What's going on? I love that my old Will is back, but what brought about this change?" He said to me, "Mom, I realize why I got this disease. God wants me to be a role model."
Wow, what perspective for a 13-year-old! How did that shape your family's view of diabetes going forward?
So often, kids have the answer that adults are struggling to find. And that was the answer we needed to help us dig in and stop feeling sorry for ourselves, and start turning our attention to the question of "What can we do?" We have a lot of blessings in life -- support from community, family, friends, teachers, coaches, and role models in the area. But what about those kids without all that? That's now the basis for everything we've done since his diagnosis, in advocacy work, starting this nonprofit, and just how we live life as a family with diabetes.
Was Will himself central to kicking off your advocacy work?
Yes, he was. It was Will's idea to make T-shirts and donate the proceeds to JDRF, and from there we've done five runs of the shirts since he was diagnosed. We've donated over $5,000 to JDRF from those proceeds. He also spoke on behalf of JDRF and did another indepedent fundraiser, so in total since that first year of diagnosis he raised probably over $10,000 for diabetes.
How did the Diabetes Will's Way organization materialize?
Again, we were riding in the car -- because really, our best conversations take place in the car since you have each other's undivided attention. I said, "You know, I've been reading a lot online and it makes me so sad to hear about all these familes who've done what they're supposed to do and have jobs, but just can't take care of their kids on the diabetes front." It crushed me to think about families who are working so hard and done what the world says we need to do to be good parents or good productive citizens, but they still can't afford what they need. Will just kind of looked at me and asked, "So what are we going to do about it?" OK, well then. Again, from kids... It wasn't something he was just going to let me wrestle with and stay up at night. He felt we were being called to do something.
Within four or five weeks after that, we were up and running and incorporated as a nonprofit. We had the people in our lives to move this forward quickly. Will's godmother had a background in finance so she became the person in charge of the finances, and became the third co-founder besides Will and I. One of his basketball coaches had a background in helping nonprofits get off the ground and getting 501(c)(3) status, so he came on as our advisor. We were incorporated in April 2014 and we've been going at it since then. Originally, we were called Will's Way. But recently we made the decision to officially change it to Diabetes Will's Way, to help make it easier for people to find us -- especially with families in need who are searching online.
Who is eligible for your help, and what exactly does Diabetes Will's Way offer?
We focus on families who have insurance -- even state-funded like Medicaid -- but still have such great out-of-pocket expenses that they can't get what their doctor is prescribing. So for example if a doctor thinks a child needs a CGM and insurance won't pay, those families have no way to afford it. We step in and purchase the equipment for them, or make what's considered an emergency cash grant which goes directly to the family to use for whatever diabetes supplies or medications they need.
One of the big things I always to share is that beyond just the money we offer, we give families hope that someone cares and is listening to them and that someone has seen their struggles and said, "It's not OK, and what can I do to help you?" It's profound, and life-changing not only for them but for those of us on the giving end as well.
What's your background leading into this?
I have my degree in Sociology and am pretty much a professional volunteer. I had children quickly after we got married, and stayed home to raise my three children and pretty much did every volunteer opportunity that came my way. I'm very self-taught in everything I do: writing grants, fundraising, attending conferences when I can afford it and have the time. I'm just a person who strongly believes there are certain ingrained human rights we should have in this day and age. So I don't have this big professional resume, but have worked on large volunteer campaigns and raising money. Diabetes Will's Way was really this catalyst into an area that I never thought I'd go into.
Was it a struggle building a new nonprofit going from the ground up?
We started out very small. It was tough to convince people, even in the Diabetes Community as strong as it is, that people needed our help -- that people could be working so hard but still not be able to afford what they needed. I got a lot of feedback initially that, "It's great, but there are bigger needs in other places." I don't disagree. But a need is a need, and you can't just compare one person's pain and need to another person's pain and need. When it's your own pain and need, it's the most important thing there is. There was pushback and doubt, even from endocrinologists -- they looked at me and said they didn't have patients like that to connect me to. But now, over the years, endos are our biggest referrals because they've realized they do have patients exactly like that.
So you're saying medical professionals took a long time to acknowledge the access and affordability crisis?
Yeah, I think it's the phrases "access to insurance" or "access to care" that misled. These patients have access, but it just didn't do anything for them. Those buzzwords floating around back in 2010-2015 led people to believe that they had insurance, so they're taken care of. But that's just not true. Back then and even now, so much isn't covered or we see this rise in High Deductible Health Plans (HDHPs) and people having to pay outrageous amounts out-of-pocket -- from $3,000 up to $10,000 for various treatments and devices from what I've seen -- before any type of coverage kicks in. Who has that much saved up per year just for type 1 diabetes? Not very many people. The idea of "GoFundMe healthcare" has become more pronounced.
What types of people generally turn to your organization for help?
To me what's really eye-opening, is that when you go through my files, you see the jobs of those families I'm funding: They are teachers of the world, small business owners, the FedEx drivers, nurses, people with religion-based careers like ministers, construction workers and more... I'm funding Middle America. Not what you'd typically think of when you think about "low-income families." These are people with decent jobs, who've gone to school and put in the work and are working as much as 60 hours a week, and they still can't do it. People think that just because you have a college degree or solid job, that you'll have access to healthcare and you're fine.
It's an unseen population, and what makes it even more difficult and heart-breaking is that these are the people who are normally giving out help. They are the ones who've stepped up and contributed to GoFundMe campaigns to help someone, or have constantly given a portion of salaries to charity. But now they're the ones who are having to ask. It's a humbling and incredibly difficult experience. No one wants to be in that position, and so many of my phone calls end in tears.
Can you break down the kind of devices and supplies you help with?
Our Durable Medical Equipment (DME) grant is pretty much insulin pumps and CGMs, and we've supported the Abbott Libre and Dexcom and Medtronic. We do cap our grants at $2,000, so if a family is getting the integrated Medtronic pump-CGM combo, we can still only give them a certain amount toward that total purchase.
For the emergency cash grants, we ask the families to demonstrate the need -- such as the last three months' of bills on the cost of their insulin, or if a distributor (like Edgepark) has put a freeze on their account so they can't get infusion sets or supplies until the balance is paid off and they can't afford that. We can step in occasionally and help there. They can't just say "I need money," because most people need money. It has to be shown with documentation. Sometimes we do get calls from people who want an emergency cash grant for something like a CGM, but proceed to tell us that it will cost them $5,000 -- which is just not true. That leads to education, if they aren't trying to scam me. Given my experience, it's a little hard to pull one over on me at this point in time.
How much assistance has Diabetes Will's Way distributed to date?
We have given out over $120,000 in total. That includes 132 grants, with 29 of those being this year (in 2019), and helping families in 35 states. As long as you're in the United States and qualify for a grant from us, we have no geographic restrictions. We're hoping to do a total of 40-45 grants this year, if we can afford it.
We cap our DME grants at $2,000, and our emergency cash grants are capped at $750. Those cash grants are going directly to the family, and honestly we just don't have a mechanism to track what it actually goes for once the money leaves our hands. So that's the number our Board of Directors feels comfortable with, knowing that if someone was to misuse this money, we're OK with this amount.
The average grant is $909, being a mix of both DME and emergency cash grants, but we've done them as low as $180 for families who need that amount and it changes their life.
Are these grants for adults with diabetes as well?
No. We do stop funding at age 26 currently, so we are for children... even though I'd love to help more adults, we just aren't big enough. And that breaks my heart, because there's just nothing out there like this for them. They just have to do the crowdfunding or ask for help from friends, family, the community. It's so tough to have to be out there asking, knowing that your life is contingent on convincing people that you need this money to live.
Where does your funding come from?
We have three main revenue streams:
- Annual fundraiser: 20% of our total funding comes from this event held in Carmel, IN, each November. It's at a local winery where people can taste wine and hear local stories. It's about Food, Fellowship, and Philanthropy, and that brings in about $10,000 a year.
- Private: 60% comes from some key private donors who give us generous amounts regularly and that's really allowed us to do what we do and take care of these families.
- Grants: About 40% comes from grants from other orgs, but we are locked out of applying for many of these because we offer emergency cash grants directly to people. Once many bigger organizations hear that, they aren't interested. I try to get past that by telling them my story of my son Will, and generally if I can get there, they may end up offering a grant.
Every single dollar counts, and I've said that I like to think I can do more with a dollar than anyone you'd meet.
The power of many just gives me goosebumps all the time. Especially when you think of how we started, with three people -- one of them being a teenager. I certainly didn't stick that total $120,000+ into profits. It all comes from people who've heard about us, believed in our message and what we're doing, and helped to change lives one at a time. They've donated money to help make other families' lives better and give them hope.
How unique is this?
Still very unique. There is a mother and daughter duo -- I believe in Arkansas -- doing something similar that's called Type 1 At a Time, but they're still setting up. They're going to more tell stories online and then have people donate to those campaigns as they explain the story.
Do you keep in touch with people after they've received grants?
There is a small percentage of families we help that I'll never hear from again. They have their money and they never want to hear from me again, and that's OK. I am not here to judge. But the majority of families do stay in contact, sending me pictures and updates and working with me on any follow-up quality control about the process overall. They'll do anything for this organization.
Any particular cases that stand out to you?
One of the stories that I have a tough time wrapping my head around is the assistant forensic coroner in Marion County, IN, who needed help getting her son insulin. Working for the county government, she has a high deductible plan, and wasn't able to get her 14-year-old-son what he needed. She works these incredible hours, slaving away for our community, and we aren't able to provide the basic care that her child needs!
She was so grateful for anything that could be done, and we were able to think outside the box to help with insulin and test strips... We normally cap at $750, but in this case, we were able to contract with CVS Pharmacy to get them gift-cards that could be used directly in the pharmacy. So that ended up being a bit more than our typical grant and ensuring that for the next year, her son had everything needed to stay healthy. And that year-breather to help rebuild her supplies and funds really turns into two or three years, before she might get back to this point. That case was so eye-opening for me, and it shows how pervasive this is across Middle America.
Are you able to help these people get back on their feet financially?
People think of this as a band-aid service we provide, and it is in a way. It's not a label I love, but there is truth to it. But giving people a breather to regroup and reach out to others, or find other organizations or assistance... it's more than just the just the initial investment we give them. That turns into a lot longer.
I use the analogy of when you cut yourself, you need a bandage to stop the blood. You start to panic and you need to stop that blood right away. Once you do, there might be a scar. And you might need further attention, but at least you've stopped it in that moment and it gives you hope that you can get to the next step. Or even to a point to prevent yourself from getting cut the next time around. That's what we are trying to do: stop that initial injury and give people more time to seek other arrangements, maybe a new job or whatever that may be. In the interim, that help means everything.
What's next for Diabetes Will's Way?
I would ideally love to help families more than once. A majority only need that one-time grant, and get the grace of a little time and breathing room. But some really need more than one grant, and right now we can only help them once because we're so small and limited. I'd really like to allow families to come back to us after a year or two and ask again. That's one of my short-term goals, to be able to re-grant.
Secondly, I'd like to expand beyond age 26 and be able to offer grants to adults as well. But a lot of funding and our grants are tied to the fact that we only help those who are kids and young adults. Once we expand that, I risk losing funding that I've worked so hard to get. It's a Catch 22 for me. Still, that's where my heart and gut tells me to go, because everyone -- regardless of their age -- deserves to have something like this in their corner, but it's a hard one for me and I hope to be able to take that leap.
How is your son Will doing these days?
He's doing great! He was actually one of the valedictorians of his high school class last year, and has done very well both academically and athletically. He's now at Purdue University, starting his sophomore year this August, studying communications and professional writing. While he doesn't have any formal day-to-day responsibilities with Diabetes Will's Way at the moment, he is still pretty much the face of the org and spokesperson for us. So he does media interviews and speaks at events, writes blog posts and that type of thing.
Now, can you please share why you chose to apply for the DiabetesMine Patient Voices Contest?
I applied for a variety of reasons, but three stand out specifically:
- First, I believe it is important for anyone advocating for the Diabetes Community to stay as up-to-date on all things concerning type 1 diabetes as possible.
- Secondly, as a parent of a son with type 1 diabetes, I wish to know as much as possible about the treatment options available and the technology associated with those options.
- Lastly, in my advocacy work I often have to help parents sort through which kind of technology they would most like their child to receive. Key to helping them would be a thorough understanding of what each is and what they do and especially what they cost -- both upfront costs and costs related to maintenance.
Any big message that you'd like to convey to the leaders attending this DiabetesMine innovation forum?
Personally, I would like the technology industry to be more upfront on costs that consumers will be paying. Where the disconnect lays is not always obvious -- do patients simply not understand the costs? Do sales reps faithfully disclose all costs including maintenance costs? Does insurance allow for disclosure of costs, and if not, why? Way too often I encounter parents who want a device for their child and they simply have no idea what the true cost of that device is.
Thanks for all you do, Lisa, and for sharing your story. We're excited to include you in our Fall "DiabetesMine University" program and the lively discussions that will surely take place there!