January Cure Champion

Fundraising on top of parenting a child with special health needs feels like a one-two punch. My wife Brenda and I do it anyway, but for six of the last seven years, asking our loved ones to help cure diabetes felt so personal that their every response hit like a life or death answer.

On July 7, 2011, one of our four-year-old twins was diagnosed with type 1 diabetes (T1D). Six weeks later, I started a graduate program at Harvard, our sons started public school and my wife juggled a full time job and all the housework. Barely used to the news and fighting to keep Jaden safe at school, that fall we somehow rallied together a motley group of 20, begged $3,000 from friends and family and attended our first JDRF Walk.

In the four years that followed, we kept that fundraising pace, proudly raising $3,500 or so a year by asking everyone we knew. We were incredibly moved by each gift of support, but the ups and downs were emotionally draining. High: Surprise gestures by people we barely knew. Low: Repeatedly asking close relations who don’t respond or understand.  High: reaching our goal and setting a new one. Low: accidentally offending a friend by asking too often.

No parent of a T1D youngster has energy to spare, but Jaden muscles through diabetes (with a smile, to boot!) so we were determined to help him.

In 2016, Brenda cautiously signed up to ride 100 miles in the JDRF Ride to Cure Diabetes. It was a team effort: she pedaled, I raised money.  We were nervous about meeting the $2,000 minimum but Jaden’s 5th anniversary and the athletic extremity breathed new life into our fundraising asks. Somehow, we raised $7,000. In 2017, we were crazy enough to sign up again, this time Brenda was joined by our 13-year-old nephew and his mom. He cycled all 100 miles, in addition to devoting a year to raising awareness for his bar mitzvah project. Talk about inspiring! Fundraising was still exhausting, but so was getting up at 5 a.m. to ride hills, so everyone persevered.

This past year, we turned a corner. I whimsically promised every donor over $50 that I would paint their name on an insulin pod for Jaden to wear. Magically, fundraising turned fun. When people donated, I used social media to ask their favorite color, symbol, honoree or hobby, upload photos of their pod and tag them so their friends could see their pod, too. 

I can’t say it was all because of the pods, but strangers contributed to our fundraiser for the first time. We sustained relevancy on social media for months. Our new neighborhood rallied behind us. Jaden had a role to play. Donors were touched. We garnered a little cable TV attention. And slowly, instead of desperate, we felt successful.

I ended up painting six months’ worth of customized pods (72), an hour at a time. Not the fastest fundraising incentive, but meditating on each individual donor buoyed my spirits. I got chills thinking about how this collection of life-sustaining temporary tattoos gave our child a tangible daily experience of his community’s support. Our family broke $10,000 this year and raised a combined team amount of $16,000, totaling more than $55,000 since Jaden’s diagnosis seven years ago. I never thought it was possible.

Diabetes has taught me many things: School advocacy. Living on poor sleep. Gratitude. Teamwork. Humility. And this year: how to leverage creativity for a cure.

-Eve, Brenda, Jaden, and Isaac

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Jaden and Brenda were on the news raising awareness about type 1 diabetes and our family’s fundraising efforts. Click here and start at 6:46 minutes:

http://www.belmontmedia.org/watch/belmont-journal-090718

[Photo: Omnipod’s disposable tubeless insulin pod system, hand-painted for 3-day wear.]