Ara Parseghian Medical Research Fund director speaks about rare disease research fundraising to student senate
Mary Bernard | Thursday, February 1, 2018
The director of the Ara Parseghian Medical Research Fund promoted the fund’s new initiatives to raise money for research on rare diseases during an address to student senate Wednesday.
The director, Sean Kassen, introduced three ways students can support the cause, including using “Coffee for a Cure” Keurig cups, collecting can tabs and taking the “Pucker Up” social media challenge.
“I met with [student body president] Becca [Blais] probably about four or five months ago and said, ‘How can we partner with the students and see if we can get them more engaged?’” Kassen said.
Blais suggested starting an initiative centered on three easy things students can do in the morning to fight childhood diseases, Kassen said.
“Coffee for a Cure,” he said, emerged out of a collaboration between business professor and Keurig co-founder Chris Stevens and Mother Parkers Tea and Coffee.
“[Mother Parkers] came to us and said [they] want to do a partnership where we do ‘Coffee for a Cure,’” Kassen said. “For every one of these little ‘K cups’ that are sold here on campus and externally, they actually give money back to the Parseghian fund.”
Currently, Tim Hortons coffee sold from the L&S Personal Service Coffee website gives back to the Parseghain fund, Kassen said. For every K cup purchased, 5 cents will be donated to rare disease research, according to the website.
Kassen said students can receive a discount using the code THNOTREDAME.
“Not only is it a great cause, but it’s also the first recyclable cup,” he said. “You probably have some K cups in your student government office, and it’s probably Green Mountain or Starbucks, and you can’t recycle them.”
The second aspect of the initiative is a can tab recycling program through the Ronald McDonald House, and the “Pucker Up” challenge is a social media-based fundraiser similar to the Ice Bucket Challenge, where participants attempt to eat a slice of a lemon without puckering. Both programs are in support of rare disease research.
“We’re committed to find a cure for these rare diseases,” Kassen said. “We’re trying to raise about a million-and-a-half a year.”
Kassen said the Ara Parseghian Medical Fund supports rare disease research and has raised over $15 million for research on Niemann-Pick Disease Type C, which, according to the National Riemann-Pick Disease Foundation website, is also known as childhood Alzheimer’s. The website said Niemann-Pick Type C is a fatal childhood illness and has an estimated 500 diagnosed cases worldwide.
“Niemann-Pick Type C is a cholesterol storage disorder,” Kassen said. “All the cells in your body actually create cholesterol. But in these kids, they can’t transport cholesterol out of their cells. The cholesterol builds up in their neurons, in their central nervous system, and that’s the first thing to go.”
Three of Ara Parseghian’s grandchildren — Marcia, Christa and Michael — were diagnosed with Niemann-Pick Type C in 1994. Kassen said Marcia died at the age of 16, Christa at the age of 10 and Michael died just days shy of his 10th birthday.
“In 1993, at about the age of 4 or 5, [Mike and Cindy] started to notice some issues [in Michael],” he said.
Kassen said Michael was walking strangely and not responding to some questions. After having been to doctors all over the country with few answers, a doctor at Columbia University diagnosed the disease.
“The doctor looks at the family and says, ‘I know what your son has,’” Kassen said. “‘It’s genetic, it’s fatal, only a few hundred kids have it and you have to test the rest of your kids.’”
Parseghian’s son Mike and daughter-in-law Cindy lost three of their four children to the disease; only their son Ara Jr. did not have the disease, Kassen said.
“As you can imagine, this was devastating,” he said. “Back in 1994, nobody knows anything about [the disease]. So [the Parseghians] said, ‘We want to try and find a cure.’”
Working with Notre Dame and scientists around the world, Kassen said, the amount of research surrounding the disease increased greatly.
Experimental treatments on children and animals have been able to slow the progression of the disease, and Kassen said he hopes to see the very first treatment for Niemann-Pick Type C approved within six months.
Kassen said he hopes the “Coffee for a Cure” initiative continues furthering research and fundraising efforts on the Notre Dame campus.
“Eventually, what Mother Parkers wants to do is have the first Fighting Irish Coffee,” he said.
Duncan Hall senator and sophomore Steven Higgins recommended promoting the brand over email.
“I think that if you sent out an email to student body saying that this is what buying this kind of coffee does, and here’s a link, that might be a good way for people to have it in the back of their minds,” Higgins said.
Walsh Hall senator and sophomore Ellison Rooney suggested taking advantage of the Week@ND email as a way to advertise the coupon code for the coffee.
Kassen asked the senators to promote “Coffee for a Cure” to their clubs and residence halls.
“If you have an opportunity for us, let me know,” he said. “If student government will help push this out, even better. This is sort of a first conversation, which I hope is a long relationship.”