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Why give to Cure Starts Now? Director explains

Posted at 10:44 AM, Nov 13, 2015
and last updated 2015-11-13 10:44:19-05

CINCINNATI – When Lauren Hill was raising money, she was raising hope – and she still is.

That's what this weekend's Lauren Hill Telethon and the Lauren Hill Tipoff Classic, a college basketball double-header at the Cintas Center Saturday, represent to Brooke Desserich.

The executive director of The Cure Starts Now said donations to the telethon and proceeds from Saturday's games will go to fund groundbreaking research that has already advanced the cause of pediatric brain cancer victims light years out of the Stone Age since Desserich's own 5-year-old daughter Elena got her death sentence from the rare brain tumor DIPG in 2006.

SEE how to give below.

"As a measure of Lauren's impact, since she made that first check presentation to Cincinnati Children's Hospital after her first game, we have been able to give out almost $3 million in research grants," Desserich told WCPO. "We had a Publishers Clearing House idea where we surprised all of our researchers with a big check presentation.

"We're really excited to see in the next few years what's going to emerge from this research. It's really amazing, different stuff."

Through the worldwide foundation started by Desserich and her husband, Desserich says donations already fund a worldwide DIPG registry at Cincinnati Children's that provides data and rare DIPG samples to researchers. In addition, the Mason, Ohio couple has organized 26 foundations around the world in a research collaborative.

And they are funding "exciting, new" research into the science of the tumor, giving doctors an understanding they didn't have before.

Their ultimate goal: Finding a cure for the DIPG that also killed Lauren in April with the hope that it could lead to a "home-run cure" for all cancers.

"I don't think it's a pie-in-the-sky notion anymore," Desserich said.

That's due, in a large part, to Lauren and her efforts to raise research dollars and spread awareness about DIPG while playing basketball for Mount St. Joseph a year ago. Lauren raised $1.9 million in the year since her story went public, and the goal of the telethon is to raise another $300,000 to help her reach her goal of $2.2 million – symbolic of her famous No. 22 uniform number.

Lauren Hill scores her first college basket against Hiram.

"We had a wonderful following before Lauren walked in our doors, and after she walked in it has grown exponentially. The world now has heard of DIPG. She made that a word that everybody understands. They equate DIPG  to something very desperate and something that requires our funding. That's one of the greatest gifts Lauren could have given us," Desserich said.

"She put a face to it."

In one of their most important discoveries so far, The Cure Starts Now researchers found that the DIPG tumor has different markers, Desserich said.

The DIPG tumor is inoperable because it winds around and through the brain stem.

"It's the deadliest, worst tumor to try to hit," Desserich said.

Desserich has clear, hope-raising goals for funding.

"Where we're at right now, a lot of our funding is about learning the biology of this tumor," she said. "This tumor was unknown before and nobody looked at it. Because of the research we funded, we now know a tumor can have different markers - multiple markers in one tumor. That's vital to know so we can start targeting it. We're probably two to three years away from completely understanding the biology of these tumors, and then we can say, 'Here are clinical trials we can use to really hit these hard.'

"Once we hit that three-year mark, the next five years is going to explode. The only issue is once we get to that clinical stage that's when we really need the big dollars to be able to fund that clinical research."

She said only $6 million has been spent worldwide on DIPG research - mainly through The Cure Starts Now.

"What I don't want to do is do all the science, know how to hit it, and nobody's funding the treatment," she said.

Desserich wants more progress and faster, of course, but she's encouraged about the slow but steady improvements The Cure Starts Now has made with no funding from the government.

"When my daughter was diagnosed nine years ago, there were no trials. Through Lauren and The Cure Starts Now, we're able to provide some trials now. We're giving families hope now," she said.

"Nine years later, we treat it better, the diagnosis is better, and kids survive longer. The doctors gave Elena six months to live. Now kids survive sometimes up to two years after diagnosis."

"We're making incremental steps, not leaps," she said, noting her group is led by people most dedicated to the cause, who are in it to win it.

"We have the most motivated people – families who have been affected, who have lost a child."

READ about some of the CSN "Heroes."

Lauren's mom, Lisa Hill, recently joined The Cure Starts Now staff in their office in Woodlawn as events coordinator. She helped organize this weekend's telethon and plans events for The Cure Starts Now chapters around the country.

Lisa Hill, husband Brent and daughter Lauren

"It surprises people to find out we're not just a Cincinnati charity," Desserich said. "Five years ago we started opening our doors across the world. We have 27 chapters in the U.S. and one in Australia, and all of them are run by families who have been affected by DIPG. We're a worldwide charity, We're funding research in The Netherlands, the UK and Australia as well as the U.S.

"It's truly a globeful effort trying to find this home-run cure to cancer."

Desserich is convinced that The Cure Starts Now is on the right track, taking a different track to fund non-conventional research.

"This is exciting, new stuff we are funding. We're understanding the science of the tumor. Before that people were just taking a shot in the dark. We're not guessing. We're being strategic. We're not wasting money."

The Cure Starts Now wants to spread the knowledge from its research, so it only funds researchers who agree to share their data, Desserich said.

"That has enabled the research to grow quickly. For example, we have one grant that involves three different institutions and they're working together to test one of their theories on how these tumors are going to react ... And we provide a funding incentive – those researchers get twice as much money. It's a model that other groups are asking us about and want to follow."

In addition, The Cure Starts Now has organized small funding groups into a collaborative to centralize research..

"There are small foundations out there that raise $20,000 or $50,000 a year and we worked with them to say, rather than everybody funding small portions of research - maybe they're funding the same research and that money's wasted - so we've got a group of 26 foundations putting their money into the DIPG Collaborative money and we fund research from there."

The Cure Starts Now also brings together its researchers in an annual symposium.

Desserich's group works without government funding – partly because the government hasn't shown much interest in funding pediatric cancer, and partly because the National Institute of Health puts too many restrictions on how its funding is used, Desserich said.

She said only four cents of every dollar the government gives to cancer research goes to pediatric cancer – "and only a small piece of that goes to DIPG."

"I don't put a lot of hope in the government. We'd be waiting 10 to 20 years," she said. "At the last symposium, I asked a lot of our researchers, 'If the government were to give you a $1 million for research, would it help you?' And they said, 'Likely not.'

"Even if the government give you the money, they're not going to give it to that innovative, groundbreaking stuff. They're very safe with their money. Being able to get money from private foundations like The Cure Starts Now, they're able to try off-the-wall things. For example, we're funding one researcher in The Netherlands who's working on a liquid biopsy and a blood test for DIPG. It's a shot-in-the-dark, but it's innovative stuff that the government would never fund.

"Hospitals do get funding from the NIH (National Institute of Health) but it's not targeted toward cancer. We'd be here forever waiting on a government entity that has been pretty ineffective."

WCPO and other local stations are participating in the telethon. It starts at 3 p.m. Friday and runs until 6 p.m. Saturday. You can donate at www.thecurestartsnow.org or by calling (513) 326-3845. 

The Lauren Hill Tipoff Classic will feature Mount St. Joseph and Hiram College, the same teams that played one year ago at the Cintas Center when Hill made her college basketball debut,  scoring the first basket in front of a sellout crowd of 10,250. It was a moment so thrilling, so inspiring that ESPN picked it as the "Best Moment" of the year.

Five thousand Lauren Hill bobbleheads were made for the Saturday's women's doubleheader, so the schools are hoping for at least that many fans.

The first game -  Xavier vs. Evansville – begins at 1 p.m.

Tickets are $10 for adults and $5 for ages 3-17 and are valid for both games. All proceeds from tickets go to The Cure Starts Now.

You can buy tickets online at GoXavier.com or Ticketmaster.com, or at the Cintas Center box office or by calling Ticketmaster at 1-800-745-3000. 

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