Addison Varns laughs after being overloaded with aerosols at a parade past her Bargersville home in 2020 during a parade past her home in Bargersville. In 2019 she was diagnosed with DIPG, an incurable form of brain cancer. Addison is one of four children honored at the Blast Cancer Brain Tumor Walk in Franklin on May 15. Scott Roberson | Diary
The potential of hope came suddenly.
Addison Varns’ family didn’t know where to turn for help when their worst nightmares came true. In 2019, the Center Grove girl was diagnosed with diffuse intrinsic pontine glioma, or DIPG, a rare brain cancer with no known cure. Very quickly they were immersed in a community of families in similar situations that could help.
That was when the Varnses discovered The Cure Starts Now, a non-profit organization focused on cancer research on those fronts that hold the most promise.
“They do everything for our children,” says Heidi Varns, Addison’s mother. “Their ultimate goal is to find the home cure – not just for DIPG, but for all cancers. Since DIPG is as complex as it is, they feel that if you can cure it, you will cure cancer. “
The Varns family, other local families affected by DIGP, and friends and supporters plan to gather in Franklin to take the next step toward curing childhood brain cancer. The Blast Cancer Brain Tumor Walk will take place May 15 at 9:00 am in Blue Heron Park and Wetland to raise money for The Cure Starts Now.
Supporters hope that by meeting their $ 30,000 goal, they can pay for a clinical trial of a potential treatment for deadly cancers that could save countless lives in the future.
“They hope that by holding this event, they will raise enough to fund a brand new trial that has never been there before,” said Keith Desserich, chairman of the board of The Cure Starts Now.
DIPG is not a disease that often offers hope. The condition describes a brain tumor located in a part of the brain stem called the pons that controls essential body functions such as heart rate, breathing, swallowing, eye movements, vision and balance.
According to the Michael Mosier Defeat DIPG Foundation, about 200 to 400 children in the US are diagnosed with DIPG every year. The condition is responsible for about 10-15% of all brain tumors in children.
DIPG is an aggressive tumor that disrupts all bodily functions and deprives a child of the ability to move, communicate and even eat and drink, according to the foundation. The tumor is not operable because surgery on the brain stem is too risky.
Desserich and his wife, Brooke, are painfully familiar with the disease. Their daughter, Elena, died of DIPG 13 years ago. It was during the family’s ordeal that The Cure Starts Now roots began to grow.
“I had a few businesses here in Cincinnati and wasn’t really interested in starting a charity. But we went out and tried to find people who were focused on research, ”said Desserich. “We felt there were a lot of charities doing good things by giving things to kids or outings or things like that, but the best gift we could give them was life.”
DIPG represents a devastatingly unique type of cancer because there are no treatment options, it affects children and has a high death rate. Researchers with whom the Desseriches spoke believed that finding an effective treatment for it would open a tool that could cure all types of cancer. Because the disease is so rare, funding for such research is limited. That was where their organization could intervene.
The foundation was officially established in 2007. The Desseriches chose The Cure Starts Now as the name for the group, coming from a phrase they wrote in a blog they put together for their daughter, Elena. In particular, a blog post expressed frustration with the ways cancer was treated and studied. The last lines of the message were, “The healing begins now.”
The story immediately went viral. The Cincinnati Enquirer had a front-page article on Desserich’s words, and donations poured in from all over the United States. The Desserichs turned their experience into a book, which was a New York Times bestseller and has reached readers around the world and shaped their organization.
“It just kept going and going,” said Desserich. “We took all the money in and said we would throw it into research.”
Since then, 40 chapters of The Cure Starts Now have sprung up around the world, including locally in Columbus. The group has funded more than $ 16 million through 114 hospitals in 14 different countries. That research has yielded an innovative registry of DIPG cancer patients to search for patterns and relationships.
They are also developing a virtual hospital that can treat patients remotely.
What you see is a better survival rate. That survival rate has nearly tripled, ”said Desserich.
The Varns family can attest to the work The Cure Starts Now does.
Addison was diagnosed in March 2019, after months of headaches, fatigue and eye problems. She was admitted to Riley Hospital for Children at IU Health, and a team of oncologists told them that while they did not treat DIPG in Riley, the Cincinnati Children’s Hospital Medical Center was involved in clinical trials that could treat Addison’s tumor – that were made possible with support from The Cure Starts Now.
During the treatment, the Varns family became familiar with the organization. The Desseriches had contacted them on Facebook Messenger and offered them support. At first, Varns was reluctant to respond, overwhelmed by the situation of her own family. But just weeks later in Cincinnati, after a treatment session, she and Addison stopped by the organization’s office.
“Oh my god, the welcome we’ve received. There were instant tears, ”Varns said.
The Varnses are one of four families in central Indiana who have partnered with The Cure Starts Now and worked with them on the Blast Cancer Brain Tumor Walk.
Adalynn Jessen plays in between treatments in Cincinnati in 2020. Adalynn was diagnosed with diffuse intrinsic pontine glioma or DIPG, a tumor of the brain stem. She is one of four children to be honored at the Blast Cancer Brain Tumor Walk in Franklin on May 15. Submitted photo.
Adalynn Jessen was diagnosed with DIPG in July 2020. The Franklin girl was also part of the same clinical trial that Addison had been in, and the Jessen family became acquainted with The Cure Starts Now while living in Cincinnati for treatment.
Two other children, Rylie Bennett from Greensburg and Brynnley Niederhaus from Fountaintown, and their families are also the first to attend the event.
The Blast Cancer Brain Tumor Walk will be a 2 1/2 mile non-competitive walk along the hiking trail in Blue Heron Park. In the past, The Cure Starts Now hosted Blast Cancer events in other places, such as Cincinnati, which were timed races. But the organizers wanted to do something that was accessible to everyone and focused more on the kids, Desserich said.
“We’ve had running events all over the country, and they were really wrong. They were events focused on running, events focused on timing. You eventually forget why you came to the place at all, ”he said.
The event is expected to attract between 1,500 and 2,000 people. Participants are encouraged to park at the Johnson County Fairgrounds, with a shuttle that takes people back and forth to the park, Varns said. After the walk, activities such as a photo wall, raffles, and poster station will be available to keep the party going.
Participating families raised money and sponsors throughout the area, raising more than $ 19,000 as of Friday morning. Every dollar that comes in goes towards researching clinical trials.
“We would love as many people as possible,” said Varns. “It will be a lot of fun and well worth doing, as our ultimate goal is to fund a grant for an entire trial.”
If you go
Blast Cancer Brain Tumor Walk
What: A 2.5-mile untimed hike on a paved path to support people fighting brain cancer.
When: May 15 from 9 a.m. to noon
Where: Blue Heron Park and Wetland, 405 Driftwood Court, Franklin
Who: The event benefits The Cure Starts Now, a nonprofit dedicated to cancer research on those fronts that hold the most promise.
Sign up or donate: thecurestartsnow.salsalabs.org/blastcancerbraintumorwalk/index.html