Strong Little Souls Founder Advocates for Pediatric Cancer Research Fund

By Sabrina DammsiBerkshires Staff
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PITTSFIELD, Mass. — Strong Little Souls founder Madison Quinn headed to the State House two weeks ago to advocate for a bill that would provide funding for pediatric cancer research. 
 
"Pediatric cancers are desperately underfunded," said Quinn, now a pediatric nurse. 
 
Quinn was showing support for Bill S.2496 An Act Improving Pediatric Cancer Research at a public hearing of the Joint Committee on Public Health. If voted into law the act would establish a Pediatric Cancer Research and Resource Project Trust Fund. 
 
The committee was hearing testimony on more than a dozen bills.
 
Also testifying on the need for cancer funding were Kathy and Joseph Arabia of North Adams, founders of the AYJ Fund, which raises money for childhood cancer research and family support. 
 
Although there is federal funding currently, Massachusetts does not fund any pediatric cancer research, Quinn said. 
 
According to the American Childhood Cancer Organization, cancer is the No. 1 cause of death by disease for children in America. Each year an estimated 15,780 children between the ages of birth and 19 are diagnosed with cancer.
 
The fund would provide grant funding for pediatric cancer research and resource projects in Massachusetts. This would include causes, prevention, education, screening, treatments and cures as well as research on the symptoms and effects patients experience after completing a course of treatment.
 
Quinn noted in her testimony that many of the treatments were developed decades before and primarily for adults.
 
"The incident rate of childhood cancers is rising and still the development of new treatments for childhood cancer remain stagnant," she told the lawmakers, and that these "harsh and aggressive treatments" can be as deadly as the disease.
 
"These treatments leave survivors with lifelong devastating side effects," Quinn continued. "I've seen time and time again children become cancer free just to succumb to the treatments that were supposed to cure them."
 
Both Quinn and the Arabias noted the state's world-class medical facilities and the importance of Massachusetts taking the lead in pediatric cancer research. 
 
The Pediatric Cancer Resource Project is defined by the bill as a community-based project that aims to improve the lives of pediatric cancer patients by providing educational, informational, and financial resources to help reduce the burden of childhood cancer and its long-term impacts.
 
Historically only 4 percent of the federal cancer budget is allocated for childhood cancer; the remaining 96 percent has gone to adult cancers. 
 
Although the budget increased to 8 percent last year, the funding allocated for cancer is currently at risk of being reduced, Quinn said. 
 
The reason the federal cancer budget underfunds the pediatric cancer budget is because "they choose to invest in cancers that are more prevalent. They tend to look at that more than the life lost," Quinn said. 
 
When an adult is diagnosed with cancer the average life lost is about seven years but when a child is diagnosed with cancer the average life lost is 70 years, she said, "because these children are just getting diagnosed and passing away so young. So the research is just not there at a federal level."

 


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Lanesborough Looks to Dissolve Baker Hill Road District

By Breanna SteeleiBerkshires Staff

LANESBOROUGH, Mass. — The Select Board is looking to move forward with dissolving the Baker Hill Road District, which is hindering the Berkshire Mall sale.

On Friday, the Select Board heard from Vice Chair Juli Baker and Chair Deborah Maynard on how Tuesday negotiations went with Cypress Equities, JMJ Holdings, town counsel, the town administrator, and state Rep. John Barrett III. 

Baker said that during Tuesday's meeting, everyone agreed the goal was to have a successful sale of the mall for redevelopment as it’s in the best interest of the town.

Baker said Barrett assured them the state is willing to take the Connector Road and that the state is willing to provide grants to the town to renovate the water and sewer infrastructure, with an estimated total of $4.5 million, to facilitate the property's redevelopment.

"We have received assurances from Representative Barrett that the Commonwealth will provide the monies and will take the Connector," Baker said.

While buyer Cypress Equities saw some benefit in keeping the district, it now doesn't since the state is willing to provide the funds and renovate the infrastructure, according to Baker. 

Baker said that in the meeting, Cypress Equities prefers to enter into a tax increment financing (TIF) and will add to the agreement an amount of funding for public safety services, which would have come from the district. She said Cypress said it would rather enter into one agreement with the town than two agreements with the town and the district.

Mall owner JMJ Holdings is willing to pay $350,000 to the town upon closing, Baker said. 

The meeting Friday was to consider moving forward with a dissolution of the district.

"But the decision that it hinges on tonight is whether to move forward to the dissolution of the Baker Hill Road District in some manner," she said.

Baker said she has worked long and hard to see if there was another alternative to this, working closely with the district which has been "very cooperative and very helpful" in making changes.

The district had agreed to make changes to its governance and taxation; agreeing to have a cap for Cypress as well as agreeing to work to have the state take over the road, sending letters of support.

"What changed this for me is that I've always said it's important to have the special district because we get the public safety funding, and it's also important for the economic district to bring the features that an economic district brings because of what we're up against with the infrastructure problems, and the change at this point is that we have a buyer who is willing to supply that public safety money and commit to it over time, along with the TIF that the town would do, which is essential," she said.

"At this point, I feel like it's in the best interest of the town and protects the town the best in terms of a future where we can develop a mall and bring that economic benefit in. You definitely need to reduce taxes, and you cannot do that without a fully developed retail operation right there. So it's been, you know, deeply difficult decision making," Baker said.

Board members Jason Breault and Jeffery Walters agreed it was the best decision to move forward.

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