Behind the smiles and fun that will surely take place at two Cleveland fundraisers this weekend rests the heart-wrenching story of two sets of parents whose children were diagnosed with life-threatening diseases. Their desire to raise money for research and cures propels them onward, even on the most difficult days.
This Friday, May 7, more than 400 people are expected to listen to live music and bid on silent auction items at Cleveland’s House of Blues for Jungle Jam 2010, which will benefit research for bone marrow diseases. Jungle Jam was created by Jeff and Sherri Kitzberger of Cleveland Heights, whose youngest daughter, Annalyse, was diagnosed at the age of 5 with two bone marrow diseases: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). Today, Annalyse is an active and vibrant 10-year-old, but as her parents know, the diseases can rear their ugly heads at any moment.
“With PNH, you can look at Annalyse 1,000 times and everything looks great, but you know inside her body it is working so much harder to function,” Sherri Kitzberger says. “It’s that 1,001st time that you see it is not quite right.” At times Annalyse has to receive treatment for related ailments, including difficulty swallowing.
The Kitzbergers held the first Jungle Jam in the fall of 2008. The event raised more than $70,000, all of it donated to research for bone marrow diseases. The Kitzbergers hope to raise more than $100,000 from this Friday’s event.
On Saturday, May 8, walkers will gather at Wade Oval in University Circle for CureSearch Walk Cleveland. Stephen Crowley and Cynthia Van Lenten have coordinated the first CureSearch Walk in Ohio to raise awareness and funding for childhood cancer research. They are doing so in honor of their daughter, Olivia, who was diagnosed with Ewing’s sarcoma, a rare form of childhood cancer, in 2002 at the age of 7. After a three-year battle, Olivia died in 2005.
Crowley and Van Lenten hope to attract more than 500 people to Saturday’s walk and to raise about $40,000 for the Children’s Oncology Group, a large network of medical experts united in researching and treating childhood cancers.
Jungle Jam and CureSearch Walk Cleveland are two very different events, but their organizers share a similarly difficult experience. After their daughters were diagnosed with a childhood disease, they were frustrated by what little funding there was and what little research was being done to find a cure.
“We were shocked that even though cancer is the No. 1 killer for kids, a miniscule amount of money goes to childhood cancer,” Van Lenten says. “Less than 1 percent of money from the American Cancer Society goes to childhood cancer.”
Van Lenten and her husband watched as Olivia and children like her received what they call “hand-me-down” treatments from adults.
“There has been only one drug treatment in the last 20 years for childhood cancer,” Crowley says.
For the Kitzbergers, the frustration came from realizing that bone marrow diseases such as aplastic anemia and PNH were “orphan” diseases, meaning they are so rare that little research has been conducted regarding them.
The only “cure” for bone marrow disease is a bone marrow transplant, but that comes with no guarantees. Finding a matching donor is often difficult, and even if the procedure is performed, there can be complications, including infection or rejection of the transplanted bone marrow. Annalyse has not had a bone marrow transplant.
Shortly after her diagnosis, the Kitzbergers connected with Dr. Jaroslaw Maciejewski of the Cleveland Clinic, a leading researcher of bone marrow-failure syndromes. Maciejewski was interested in conducting research to see if viruses caused certain types of bone marrow diseases, cancers and blood disorders.
Inspired by the doctor’s enthusiasm, the Kitzbergers put together Jungle Jam to raise funding for his research and awareness about the diseases.
The more than $70,000 raised at the first Jungle Jam served as seed money to initiate research. From there, Maciejewski received a five-year grant totaling $1.9 million from the National Institutes of Health.
Proceeds from Jungle Jam 2010 will benefit a new research study that will look at using patients’ own stem cells for replacement therapy in the bone marrow.
Crowley and Van Lenten have been involved with the national CureSearch organization, helping to lobby Congress for funding of childhood cancers. They believe that CureSearch and the Children’s Oncology Group provide the best possible hope for finding a cure for childhood cancer.
Although Olivia lost her battle with cancer, her parents are determined to help other children and their families by raising money for research and a cure.
“We were involved in a fight to keep our daughter alive,” Crowley says. “Now, we’re channeling that energy so others don’t have to suffer.”
Although the Kitzbergers, Crowley and Van Lenten have very personal reasons for spearheading fundraisers, they agree that at some point the mission becomes much greater: to help all children suffering from a particular childhood disease.
“These children wake up with a smile every day. They just want to get back to being kids,” Van Lenten says about the youngsters she has seen with cancer. “It’s the adults’ duty to work for them to give them a chance.”
There is still time to donate to or attend these two fundraisers. For more information about Jungle Jam, visit MakeItHappen4BMD.org. To learn more about CureSearch Walk Cleveland, visit CureSearch.Kintera.org/faf/home/default.asp?ievent=419040.