Make It Better

By Heather Steliga

Standard Correspondent

BARNARD — “This disease has been found in dinosaur bones and in mummies,” said Barnard resident Ann Graham, president and founder of MIB (Make It Better) Agents, a nonprofit organization focused on osteosarcoma, a primary bone cancer that affects children aged 10-20.

According to Graham, it is the oldest known cancer, and a rare cancer, accounting for less than one percent of all cancers. It almost never happens in adults, except as a secondary cancer.

Graham was diagnosed with the disease at age 43 while training for a marathon, and was treated in the pediatric ward at Memorial Sloan Kettering Cancer Center in New York City. She was the only adult on the floor. She was in awe of the cheerfulness of the sick children around her.

Graham’s disease and treatment were aggressive, and her prospects for survival were not good. She underwent limb salvaging surgery, with titanium replacing her femur, knee and tibia and 30 rounds of a combination of four types of chemotherapy.

Through Allied Cancer Online Resources (ACOR), a wider osteosarcoma community, she got to know another patient, a 10-year old girl named Alyssa Divers, who had exactly the same disease and was being treated in Virginia in the same way at the same time as Graham was in New York City. They became dear friends.

Alyssa was a dancer. Her limb salvaging surgery seemed to go well, and she continued to dance despite the titanium in her leg. But then there was a recurrence; a lump was discovered. Her leg had to be amputated.

Alyssa danced as an amputee for a short while.

“There is no second-line treatment for osteosarcoma,” said Graham. “If the first treatment fails, the only option is to find a clinical trial, which she did, and it failed.”

Graham received a call from Alyssa’s mother saying, “They are sending her home to die. There are no more treatments left.”

Graham replied, “No. She is coming home to live, and no matter how much time she has, she has to fill her time with the best experiences possible.”

Graham called some of her friends to help her arrange a three-day trip to New York City for Alyssa and her family, so Alyssa could live at the end of her life, enjoying her favorite things. They stayed at The Surrey Hotel, a beautiful hotel; had backstage passes and front row seats for the Rockettes; enjoyed lunch at the American Girl store on Fifth Avenue, where they gave Alyssa a doll that looked like her with no hair; then Mary Poppins on Broadway. The last night they went, with VIP passes, to see The Nutcracker at Lincoln Center, where they allowed Alyssa to dance across the stage. She died 12 days after dancing across the stage at Lincoln Center. That was the beginning of MIB Agents. Graham says that all pediatric cancers are considered “rare” and thus they are overlooked for research funding. Through her nonstop efforts on behalf of sufferers of the disease — such as visiting the D.C. office of Vermont Senator Leahy and meeting lobbyists trying to get a bill passed that would help fund pediatric osteosarcoma research — one thing led to another.

After a day on Capitol Hill, she met with a friend and fellow pediatric cancer advocate, who told her if she really wanted to make a change, she needed to plan and host a national conference to bring together the experts in osteosarcoma. After talking to friends in the osteosarcoma community, it was clear to Graham that the need was great. Physicians, patients, survivors, researchers and lobbyists were all telling her “we need a conference,” and they asked her to put it together.

She agreed a conference was needed, and having worked in the hotel business and event planning, she knew how daunting it was to make one happen, when she made a contact named Mohand Anand.

“Mohand became my project manager, a title he held as an executive at Microsoft in Seattle. Together we planned the conference, while unbeknownst to me, he was dying of osteosarcoma,” she said. “He took the money that he had put down for a house and donated it to MIB Agents for the conference.”

“MIB has now grown into a 501c3 nationwide nonprofit organization that provides direct pediatric patient support, end of life missions, the only annual osteosarcoma conference and funds meaningful and impactful osteosarcoma research funding,” said Graham.

Using a “super-hero” theme, MIB sends “amb assador agents” out on “missions” to work with osteosarcoma patients throughout the nation. In many cases, the agents are survivors of the disease who help current patients, known as “warriors,” through their ordeal.

Graham is currently traveling to find a new location for the fourth annual FACTOR conference. Its name stands for Funding, Awareness, Collaboration, Trials, Osteosarcoma Research. It had been in Miami the last three years. She is considering Phoenix and the Las Vegas area but has not finalized any plans yet.

Speaking on the phone from Las Vegas, Graham said, “Nearly every one of the speakers presenting at the conference does so at their own cost; no speaker fee or expenses are paid. This is the only conference on osteosarcoma, and the only medical research conference that brings together all constitu ents—families, phys icians, advocates and researchers. There has not been a new treatment for osteosarcoma for forty years. Kids are dying and we need kinder, more effective treatments

now.”

The conference always ends with a marathon, with runners being paired with a child in treatment for osteosarcoma, all wearing bright yellow super-hero capes. Some are running in honor of a patient who died from the disease, known as “angels.” Some are running on prosthetic legs, crutches and some are in wheelchairs.

There is a large group that travels from Vermont to volunteer at the conference and participate in the marathon. There is also a group of women in Bethel who operate a high-end thrift shop to raise money for the cause. Additionally, they get together and write letters to young patients with the disease. There are happy success stories. Graham herself is one. Alexis Johnson is another.

Graham and Alexis had the same kind of surgery and found each other in 2010 through ACOR. Graham had sent an email of encouragement to Alexis, aged 18 at the time, telling her that she was a warrior and how much she admired her. Alexis’ limb salvaging surgery failed, and her leg was amputated. They met for the first time when Alexis was 22 and attended the conference.

“It’s like meeting your celebrity crush, almost,” Graham said. “Many were saying this about meeting the doctors and mentors who had helped them along the way. We had been friends and copatients for so long, to finally be able to meet in person and hug was beyond lovely.”

“I just recently reached eleven years being cancer free and eight years since my amputation,” Alexis states.

She is now 26 and is attending medical school, aspiring to become

See MAKE IT BETTER Page 9D

Ann Graham

Ryan Kensington, a survivor, will be a keynote speaker at MIB’s FACTOR 2019 conference later this year.

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Alexis Johnson, a survivor of osteosarcoma (bone cancer) works with MIB as “Mission Commander.”

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All in the family — a group of warriors and survivors and supporters of MIB (Making It Better) for children with bone cancer.

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The late Alyssa Divers, who inspired the founding of the nonprofit organization MIB (Make It Better) Agents.

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From Page 1D an oncologist specializing in pediatric cancer. She works with MIB on all aspects of MIB Missions as the “mission commander.”

Graham credits the Hyundai N.A. company for being the largest funder of pediatric cancer research, having funded $160 million in the last 20 years. In 2018, their osteosarcoma-specific grants totaled over $3.5 million, the most ever for osteosarcoma. MIB is the only nonprofit organization with which they have most recently partnered, for the osteosarcoma-specific conference.

MIB Agents has formed a new partnership with the Broad Institute of MIT and Harvard, a biomedical and genomic research center in Cambridge, MA. Together they are creating a data base that will allow patients to share their data to inform and further osteosarcoma- specific research.

“One of the problems in moving this disease forward,” says Graham, “is that there is very little data available on the disease. Without the data, it is hard to make progress in developing successful new treatment methods.”

MIB Agent and “warrior” Ryan Kennington, was diagnosed at age 17. Now 21, he is on The Broad Project with MIB. He has just finished his second year working at the University of Utah, Huntsman Cancer Institute’s Schiffman Lab, and is now on track to be a Pathology MD. He will be a panelist and speaker at FACTOR 2019 “and is just brilliant,” says Graham.

“Children and young adults who die of osteosarcoma actually die by suffocation and starvation,” Graham explained. “That is one of the reasons I think so few people even know about the disease. It’s just too painful to look at. We have to bring it out of the dark ages. That’s why I started MIB — to make it better for warriors fighting the disease. We have to Make It Better and never give up hope.”

“There has not been a new treatment for osteosarcoma for forty years. Kids are dying and we need kinder, more effective treatments now.”

– Ann Graham, president and founder of MIB (Make It Better) Agents