Tragedies build hospital, nonprofit connections

LIVING ON: The Izzy Family Room is dedicated to the memory of Isabelle Marie Wohlrab, who was diagnosed with Stage 4 rhabdomyosarcoma at age 1 and died at age 3. / COURTESY AL WEEMS PHOTOGRAPHER
LIVING ON: The Izzy Family Room is dedicated to the memory of Isabelle Marie Wohlrab, who was diagnosed with Stage 4 rhabdomyosarcoma at age 1 and died at age 3. / COURTESY AL WEEMS PHOTOGRAPHER

When the death of a child through disease serves as the impetus for forming a nonprofit, it can propel lasting, constructive connections between a hospital and the charity the organization represents.
That was the case for both the Izzy Foundation and Gabrielle Dinsmore Heart & Hope Fund, two nonprofits that have established working relationships with Hasbro Children’s Hospital within the Lifespan hospital system. It is also the case for a handful of similar nonprofits and foundations the hospital works with, said Michele Brannigan, major gifts officer at Hasbro.
“These family foundations [and nonprofits] can sometimes fill a need that we have trouble filling by some other means,” Brannigan said. “They become much more than a donor. They’re sharing the mission of your organization and it becomes a very important relationship.”
Drs. Tina and Kyle Wohlrab of Providence are the parents of the late Isabelle “Izzy” Marie Wohlrab, who was diagnosed with Stage 4 rhabdomyosarcoma, a rare cancer, at age 1, and died two years later in 2012. They founded the Izzy Foundation in 2011, a few months before Izzy died, and decided to keep it going to perpetuate their daughter’s memory and try and help other children and families suffering a similar fate. (Both parents are doctors at Women & Infant’s Hospital in the Care New England health system.)
Similarly, Louise and Jeff Dinsmore of Coventry are the parents of the late Gabrielle Dinsmore, who suffered from a congenital heart defect, hypertrophic cardiomyopathy, an extreme thickening of the heart-wall muscle, and died in 2010 just short of her third birthday. The parents founded the Heart and Hope Fund in 2011.
This past April, Hasbro opened The Izzy Family Room on the fifth floor, a place where the families of a sick child can go to rest, eat, relax, wait between visits and meet other families undergoing some of the same challenges, said Tina Wohlrab. The Izzy Foundation raised $190,000 to fund the design and renovations to the new family room, and Hasbro received additional support from Children’s Miracle Network Hospitals, she said. The Wohlrabs got the idea for the family room when treatment for Izzy took them to hospitals in Germany, which had such facilities. They found themselves interacting and getting support from parents going through similar ordeals, so they approached Charles Olmstead, director of shared services at Lifespan once back in the U.S., Wohlrab said.
“He was incredibly moved,” she added. “And he is one of those people who always said, ‘Yes, I think we can find a way.’ ”
“We worked with them hand in glove because they were working on a renovation to the hospital,” said Brannigan.“We had to have many different groups from the hospital at the table, including our design and architect team, the Patient and Family-Centered Care Advisory Council and members of the oncology team and medical staff to make sure we were meeting patient needs for the project.”
The project took two years and several fundraisers sponsored by the Izzy Foundation, Brannigan said.
“It was very much a two-way street,” Brannigan said of the mutual support. “They organized their events, but we did help spread the word within the hospital.”
For the Heart and Hope Fund, the journey of raising funds to combat pediatric heart disease and defects has led to a primary partnership with Hasbro’s Pediatric Heart Center, Louise Dinsmore said.
Most recently, center Director Dr. Lloyd Feit, Gabrielle’s doctor, needed a social worker and approached the nonprofit for a grant to help fund the position, Dinsmore said. The Heart and Hope Fund awarded Hasbro a $13,000 grant and Hasbro has provided additionally funding, Dinsmore and Brannigan said.
“I know that social worker is making an enormous difference in coordinating the challenges pre- and post-surgery [for children in Dr. Feit’s care],” said Dinsmore.
“They do fundraisers and have been very generous to give back to the Pediatric Heart Center at Hasbro led by Dr. Feit,” Brannigan said of the Dinsmores. “They’ve been wonderful in terms of trying to meet whatever needs the program has.”
While the Izzy Foundation’s mission in Rhode Island has been heavily focused on kids with cancer, the Wohlrabs have broadened the organization’s scope out of state so that the money raised can help improve the lives of children with a variety of disabilities and diseases, Tina Wohlrab said. Since relatives live in North Carolina, one project the foundation supports there is a redesign of a child care playground at Sand Hills Child Care Center for children with special needs, she said.
To date, the Izzy Foundation has raised about $465,000, Wohlrab said, while the Heart and Hope Fund has raised about $800,000, Dinsmore said. A long-term vision for the Izzy Foundation is to establish a day care center for kids with cancer and their siblings, Wohlrab said.
Dinsmore is working on a three-year strategic plan. That includes perpetuating a camp for children with congenital heart conditions that the nonprofit founded in 2011 with Dr. Feit, the first of its kind in Rhode Island.
“We have to make Gabrielle’s Heart Camp sustainable for years to come,” said Dinsmore. “The camp is the only camp in this region for kids with congenital heart defects and heart disease aged 8 through 15. The goal of the camp is to provide kids with a fun experience but also teach them life skills to help them navigate the challenges of living with a heart condition.”
From a hospital perspective, Brannigan said the value to Hasbro of the work these nonprofits and foundations do is “tremendous.”
“When Hasbro Children’s Hospital was built in 1994 it represented the largest fundraising campaign in the state at the time,” Brannigan said. “Without community support from groups like the Izzy Foundation, we wouldn’t be able to have extras like the beautiful renovation of the family room on Hasbro 5.”
These nonprofits also help the hospital nurture relationships throughout the surrounding community, she said.
“There is a groundswell of support from the community from every area who want to do fundraisers for the hospital,” Brannigan said. “Parents today are doing a great job of instilling the value of giving back to the community.” •

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