The Daily Review, Morgan City, Louisiana
By GEOFFREY STOUTE
The family of a 4-year-old Morgan City girl who died last November from an inoperable brain tumor donated $25,000 Saturday to the Childhood Brain Tumor Foundation.
The family of Ali Aucoin gathered at the young girl’s Morgan City home where her parents, Jarrod Aucoin and Spring Aucoin, presented the check to Kiren Day, a board member with the Childhood Brain Tumor Foundation in Germantown, MD. Day traveled to Morgan City from Washington, D.C., for the presentation.
In December 2007, Aucoin, then 3, was diagnosed with pontine glioma, a rare brain-stem tumor. Less than a year later on Nov. 2, 2008, the disease took her life.
The funds donated Saturday were raised through local benefits, including poker runs, a raffle, plate lunches and an auction — all held during a four-month time span in early 2008.
“Lots of friends and family pulled together,” Ali’s uncle, Gordon Jones, said. When all of Ali’s medical expenses were paid, $25,000 remained and the family decided to donate it to the Childhood Brain Tumor Foundation. Day said it was impressive that this family was able to raise so much money in a time when people still were recovering from Hurricanes Katrina and Rita, as well as weathering the national economic downturn. She said this type of tumor, an aggressive cancer that infiltrates adjacent normal brain tissue and likely spreads outside the central nervous system, is under-researched. Day said the only way to determine how to successfully treat the cancer, which is rare and primarily affects children, is to devote more attention to it. The local donation can help make that happen, she said. “This is going to be a tremendous catalyst,” Day said of the donation’s effects. While the organization previously has received donations this large from families, they have never been this large for this particular tumor, pontine glioma, she said. Spring Aucoin said she would like to bring awareness to this disease in her daughter’s name, so that it becomes as common in research circles as breast cancer and leukemia. “I just don’t want her to be forgotten,” she said.
Day said she hopes the Aucoin family story will show others that there is something that can be done in the youngster’s memory. “People respond to people,” Day said. “People especially respond to children.”
Aucoin was one of three Tri-City area citizens — another child and one adult — who have died in recent years after 20 being diagnosed with the disease. The organization partners with the National Institutes of Health and East Coast hospitals to produce “ground-breaking” research, Day said. Depending on how much money the organization raises, it also contributes to this research annually. Because it is hard to extract tissue samples from the area of the brain this disease affects, scientists are looking for other ways to research it.
Currently, Dr. Javad Nazarian of the Center for Genetic Medicine at Children’s National Medical Center in Washington, D.C., is studying the disease by looking at protein profiling to determine a trend among them. By analyzing these proteins, scientists can record observations about this disease. While it is a challenge to research without impacted human tissue, Day said researchers need to build on the information they obtain from protein profiling.
Each year the Childhood Brain Tumor Foundation requests grant proposals from scientists for work on brain tumors. The scientific panel chooses those that are appropriate, the board approves them and the foundation then funds the research. In return for the funding, however, the scientists must present a report of their research findings to the foundation. “If it (research) is effective, we continue to fund,” Day said.
During her visit, Day presented the family information on the latest findings regarding pontine glioma.
When large donations such as the Aucoin families are received, Day said the foundation requests that any research done with the funds that is published be memorialized in the deceased child’s name. Those wishing to make donations in Aucoin’s name may do so by logging on to www.childhoodbraintumor.org, and clicking on the “Give Online” link. In the comments section, state that the gift is in memory of Ali Aucoin. Yet more money will be raised locally for the cause. Next May a race will be sponsored by the Childhood Brain Tumor Foundation at Lake End Park in Morgan City and all proceeds will be donated to pontine glioma research.
We look forward to working toward funding important research initiatives for DIPG and thank Ali’s supporters and others with an interest in DIPG for making this possible.
Written by Geoffrey Stoute, The Daily Review, Morgan City, LA, September 29, 2009.
On May 15, 2010, the 1st Annual Ali-Gator event will be held to continue the tradition of supporting research initiatives for DIPG.
Read the personal story of Ali Aucoin.
