Every time I look at the price tags of my diabetes supplies and D-devices, I cringe a little.
Because it all costs a lot.
And knowing that many people want and need these items -- like insulin pumps and continuous glucose monitors, that I've found invaluable -- but can't afford them, tears at my heart.
That's why we've been so happy to see our Diabetes Community come together in critical times to help people get what they need, if even just to share info about where financial help or resources are available.
Earlier this year, our friend and fellow D-Advocate Christel Marchand Aprigliano started compiling a list of where people with diabetes can turn for help in funding the high costs of diabetes; we have to tip our hats to Christel for putting that together.
We've also come across some homegrown charities working to help get these items into the hands of people who need them most. Two that stand out are called Will's Way and the American Board for Child Diabetics (aka ABCD, for short). Both are doing great work that's absolutely share-worthy.
Where There's a Will...
Based on the north side of Indianapolis, the charitable Will's Way is a new non-profit aimed at assisting underserved folks with type 1s in the Midwest. Formed in April 2014, this is a family-run organization established in honor of Will Oberndorfer, who was diagnosed just before Thanksgiving in November 2012.
Thirteen at the time, the teenager had all the classic symptoms and was self-diagnosed at home before the family made their way to the hospital for the official diagnosis and all that follows.
A few weeks after the teenager's diagnosis, the family decided to make and sell T-shirts that said, "Willstrong" on the front and "Stronger than Diabetes" on the back, and they donated all the proceeds to the JDRF Indiana chapter to help other families with diabetes. In the 18 months since diagnosis, the Oberndorfers have raised $10,000 for their local JDRF chapter.
"Whenever I, or Will's dad, or two sisters start to get pessimistic about an obstacle in front of us, (Will) always says, 'Come on. We have a Will... now there's got to be a way,'" D-Mom Lisa Oberndorfer says. "He said it so often that one day I said, 'That's right. Because where there's a Will, there's a Way.' It stuck. So when we thought about turning our desire to help into an official charity, the name was easy."
Last year, the family realized they could directly help families who are underinsured and need financial support for diabetes devices.
"What we have found is that there are programs out there for families without insurance, but nothing is available to that family that has a high deductible and co-pay, often making the idea of getting a pump or CGM unreachable," Lisa said. "That's where we step in. We make grants directly to the pump company or third-party supplier in that child's name."
Lisa says grants are for a maximum $2,000 for insulin pumps and CGMs, but the organization can also make a one-time cash grant of $200 to families going through a crisis like a job loss, insurance change, or additional child being diagnosed.
Since they got started four months ago, Will's Way has funded two families to help them buy insulin pumps, along with an emergency relief grant for a third family to help them pay back fees to Medtronic for a new pump after the child's first pump broke unexpectedly. Right now, the focus is on kids. But Lisa tells us they plan to expand to helping adults down the road as they're able, which could be within the next three to five years based on funding and interest levels.
On top of raising money to fund these assistance grants, Will's Way has partnered up with a candy shop in Central Indiana called Simply Sweet Shoppe to help raise awareness about diabetes. Yes, a candy shop! The Oberndorfers are using the partnership as an educational tool to help teach the public that sugar doesn't cause type 1 diabetes, and people who live with it are not banned from sweets for life.
We think their ideas are both clever and impactful, and we commend the enterprising spirit of this family!
Alphabet Soup, With a Cause
What the Oberndorfers have done is similar to the efforts of another family in California, that established a non-profit called the American Board for Child Diabetics (ABCD) a couple years ago. As it turns out, ABCD was established just about the same time as Will Oberndorfer was diagnosed in November 2012.
Based in Half Moon Bay, CA (in the San Francisco Bay Area), Doug and Colleen Haupt came up with the idea in the name of their two grandsons who were diagnosed several years earlier at ages 3 and 4, and a niece diagnosed at 8 years old.
The couple's vacation to Hawaii's second-largest island Maui is where it all started. They visited the Fleetwood On Front Street restaurant that had recently opened and offered patrons the chance to buy a burger for a little more than the average menu price... upwards of $35,000! Yes, the restaurant owned by Mick Fleetwood from the popular classic rock band Fleetwood The restaurant was offering a special "Hog Burger" that comes delivered-to-your-door complete with a shiny new Harley Davidson bike signed by Fleetwood himself (the burger itself is made with a pound of beef, grilled Maui onions, and special sauce).
The Haupts learned that some do-gooders were buying the bike-burger to donate to charities, while others auctioned if off for a charity, to raise funds for all kinds of causes. Or part of the price can go to a local charity of your choosing. The Haupts decided to take the plunge in the name of supporting type 1 diabetes — and that became the genesis of their ABCD organization.
The background is that Colleen's daughter has seven children, two of them with type 1, and the daughter's husband is an iron worker who's faced insurance challenges in the past when the union dropped hours or coverage. So they've been in the situation of needing financial help, as have many other families they know.
The inspiration from that charity-supporting Hog Burger got the Haupts thinking they could make a difference by establishing their own non-profit.
"It turned what seemed to many a financially crazy decision, in our normal lives, to a decision that we know was right and couldn't justify logically. We still say to friends and family, 'We know it's crazy, but we know it's the right thing to do'," Colleen says.
The mission: to provide life-changing diabetic supplies and enriched life experiences to families lacking adequate financial resources. They started about a month after the Hawaii vacation, but it took more than a year to get the official non-profit designation — which came in July 2014. To date, they've funded an estimated $20,000 in programming and supplies, and Colleen tells us they have about $15,000 worth of diabetes supplies like test strips, infusion sets, and OmniPod pump supplies on hand to give out. (Just send a request!). Since they aren't charging for these supplies, Colleen says a liability clause helps them avoid any prescription or supply issues that may arise.
They already have three chapters — the Bay Area of CA; Maui, HI; and Bend, OR — and hope to expand into other parts of the country.
But what they do goes beyond distributing D-supplies. They also offer local hospitals funding to help newly-diagnosed families who might need financial help, and they've worked with a Half Moon Bay area restaurant called Flavor on the Coast to create a focused-fundraising effort. Known as the Gift of Life Appetizer program, 100% of the proceeds earned from a special menu appetizer go to the ABCD organization. It's meant to be a model for other restaurants nationally, and Colleen says for this to work, it's important that all the money raised stay within the local community to help area families with diabetes.
Most recently, she's partnered with the Diabetes Youth Families (DYF), formerly the Diabetes Youth Foundation of California, and offers scholarships to the local diabetes surf camp in Pacifica planned for Sept. 21.
Colleen says the focus is on kids and youth, up through their young adult years, but ABCD won't turn anyone away who needs help.
"We're all about bridging the financial gap," Colleen says. "I want to make sure that no family goes through needing supplies and not being able to get them."
These are just two great new "mom and pop" non-profits created to help financially-challenged families with diabetes. Others have been around for years, like the New York-based ACT1 Diabetes group that offers a non-prescription supply exchange program for PWDs in need.
With nationwide insurance changes and supply costs skyrocketing, the need for these initiatives is stronger than ever. So we say: thanks to all who are doing what they can to help out!
Know of any additional help program for the Diabetes Community? Please share...