When Carol Sisney’s then 12-year-old daughter Kelly started drinking a lot of water, Carol sensed something wasn’t quite right. Kelly, an active 7th grader, also started getting headaches and went through what many might have attributed to nothing more than hormones or a growth spurt for the future 6’1” volleyball player. But Carol trusted her intuition, one that couldn’t look past the fact that her grandfather had had type 1 diabetes (T1D). She had seen the autoimmune disease and its various complications first hand.
At the doctor’s office, Carol was reassured that Kelly would likely present much sicker if diabetes was the answer. At diagnosis of T1D, kids often end up hospitalized with blood sugar levels in the 700s-1000s (comparatively, a normal range is 80 to 120). Nevertheless, Kelly got the simple urine test. “Sure enough,” Carol says, “her number was 214.”
As Kelly Sisney—a now successful young professional working at Apple and engaged to be married later this year—puts it, “Everything kind of just changed.” Carol and Kelly grew even closer as they monitored her glucose levels around the clock and began treatment with insulin shots and then an insulin pump. (Kelly was one of the first T1D patients under the age of 18 to get on a pump, taking advantage of that newer technology within just a few months of her diagnosis.)
Fortunately, in catching it early, Kelly’s pediatrician and endocrinologist were able to keep her out of the hospital. “Still, it hits you like a Mack truck,” Carol says in her Aptos living room as a sliver of the Pacific shimmers above the coastal tree line beyond. The former middle-school Spanish teacher was as scared as any parent of a child with a life-threatening illness would be—and undeterred. “You might as well take the bull by the horns,” she says, “and learn everything about it.”
The Sisneys sure did. The following year, Kelly’s winning science fair experiment tested glucose levels of a diabetic (her) and a non-diabetic (her mom) after eating, exercising, or at rest. In high school, she participated in, among others, an NIH clinical trial of a continuous glucose monitor that led to FDA approval. Meanwhile, Carol united with other moms of T1D kids as “Mommies on a Mission” to promote, along with Kelly, the 2004 passage of California’s Proposition 71, which supported stem cell research in the state, in the hopes of curing T1D as well as other diseases. The Sisneys also did outreach, meeting with other families in their area with children recently diagnosed.
In other words, their subsequent advocacy for others facing this disease as well began early and hasn’t waned. After Kelly graduated from USC in 2012, she became involved with JDRF, formerly known as the Juvenile Diabetes Research Foundation and now the leading global organization funding T1D research. “I helped start the Young Leadership Committee,” she says of JDRF events aimed at getting young professionals involved with affordable ways to come together. Kelly chaired the 2019 One Walk Walktoberfest, a beer and wine garden post-walk gathering, and doubled the monies raised over the previous year from $11,000 to $22,000 through both donations and ticket sales. “We got White Claws, which are not only trendy,” Kelly says of the low-sugar hard seltzer, “but when you have diabetes, when you drink things without carbs it makes your life a lot easier.” Spoken as only those continuously managing this disease can fully understand.
JDRF has invested $2.2 billion in research since its founding in 1970, and while grassroots contributions are paramount to the organization’s mission, Kelly points to a crucial byproduct of JDRF events like Walktoberfest. “It’s more of a community builder to get to know other people that have T1D and also get people more invested in starting to do things with the charity,” Kelly explains. “Being able to relate to other people and share tips and things, and work toward a common goal, has been really valuable. And fun, honestly. All these events are really fun.” The day after last year’s Walktoberfest, Kelly became engaged and she’ll marry this October in Carmel.
Next month on March 20, the Sisneys will be honored with the Impact Award at another key and indeed fun event: JDRF Greater Bay Area Chapter’s 2020 Tee to Table at The Ritz-Carlton, Half Moon Bay. Now in its sixth year and chaired by JDRF volunteer and fellow T1D mom Patty Sue Mozart, the event includes a golf scramble on the Ocean Course and concurrent 24-person round-robin tennis tournament, spearheaded and co-chaired by avid tennis player Carol, who has also served on the Tee to Table committee. The athletic fun is open to all and followed by respective luncheons. The evening festivities kick off with cocktails ahead of a gourmet dinner, live auction, and dancing. Last year alone, Tee to Table raised more than $1.2 million.
“Each year at the JDRF Tee to Table event, the Impact Award is presented to community members who are exceptionally committed to the JDRF mission to improve lives today and tomorrow by accelerating life-changing breakthroughs to cure, treat, and prevent T1D and its complications,” the organization puts forth. “The 2020 honorees, Carol Sisney and Kelly Sisney, were selected for their extraordinary dedication to JDRF and to the health and well-being of the T1D community.”
Along with husband Bret and son Brian, Carol and her family have long supported JDRF alongside Kelly. Carol and Bret have provided sponsorships and auction items and donated bottles of award-winning Chardonnay and Pinot Noir wines from their Lucia Highlands vineyard to all of JDRF’s signature events, including Hope Gala, Summer Classic, and Tee to Table. “The positive impact that this mother-daughter team has made on the JDRF community is immeasurable,” the organization asserts. “We are pleased to honor them at the 2020 Tee to Table event.”
2020 Tee to Table
March 20, 9:30 AM – 11 PM
The Ritz-Carlton, Half Moon Bay
Presented by Devcon Construction
M/C: NBC News Anchor Raj Mathai
Fund A Cure Speaker: Avery Reller
For more information, visit jdrf.org
So, how does it feel to accept JDRF’s recognition after nearly two decades with T1D in their lives? “It’s an unexpected honor because I’m Kelly’s mom so, to begin, I’m doing it because my daughter has a life-threatening disease,” shares Carol, who also acknowledges the exceptional medical care, resources like JDRF, and the good fortune that have all helped Kelly do well. “But the thought is, and it’s from my training in Catholic school, is to turn and help someone else. To know what we’re doing here in Silicon Valley really is a global thing and the idea of being a part of that is more than I ever imagined. And it’s coming naturally because it’s something that I really believe in.”
For Kelly, “It feels great,” she says. “I’m especially excited for her [Carol] because I think she often does a lot both for me and her family and doesn’t always get the recognition she deserves. I’m also really excited JDRF has helped me build a community of people that both have type 1 diabetes, but also a lot of my friends have gotten involved because of my involvement. And to be able to have them there in March is going to be really fun and special.”
At Apple, Kelly works for the Worldwide Supply Demand Management team in Operations. “I forecast the worldwide demand for iPad,” she says. Living and working in Silicon Valley, the epicenter of innovation, Kelly is also the ideal person to ask about technological strides in treating T1D.
While she notes that the insulin pump itself hasn’t advanced considerably since her childhood, there has been progress. “The biggest change I think has been with the continuous glucose monitor that didn’t exist when I was diagnosed,” says Kelly, who back then had to prick her finger to take her blood sugar. Now, a continuous glucose monitor takes her blood sugar every five minutes. Similar to her pump, it means wearing another device that goes under the skin, but has evolved to be “extremely useful and accurate,” she says.
As innovative crossroads would have it, Apple Watch also allows Kelly to display her blood sugar readings using the Dexcom App. “Being able to look at my blood sugar during a meeting or in a class when I was in business school and not have to take out a device has made a big difference. Or if I’m at a workout class I can just see what my blood sugar is really quickly and know if I need to give insulin. That’s definitely been the biggest change in my life,” she explains. “I do think, though, that it is crazy how large my insulin pump is. Where our phones do so much, yet all my insulin pump does is turn a little screw. So I’m personally exited to see what the different tech companies do that are approaching healthcare in a different way, where they’re making a lot of changes. Some are FDA approved, some are different little lifestyle things that can help a lot with technology that can move quicker.”
For the approximately 1.25 million Americans living with T1D today, the impact of those little differences—and of caring contributions like Carol and Kelly’s—is undoubtedly huge.