Celebrating the 2026 CTF Cloud Carrier Honorees

When Rick Jaffa and Amanda Silver met Steve and Alyson McKenzie in the early 2000s, both families were searching for coordinated care for their sons, Joe and Andrew, who had NF1.

The specialists their children needed worked at different hospitals. The parents carried information from one appointment to the next and tried to make sure each doctor understood the full picture. Steve once tried to arrange a call among Andrew's physicians so they could compare notes. It never happened.

Rick Jaffa and Amanda Silver

Working with clinicians and the Children's Tumor Foundation, the families raised and contributed funds for a nurse coordinator at Children's Hospital Los Angeles (CHLA), helping launch a multidisciplinary pediatric NF clinic there in 2005. For Amanda, the difference was profound. At CHLA, she recalled, "all these doctors were talking to each other." Even with the long drive to appointments, "It was a haven." It became the first clinic in CTF's NF Clinic Network, which now includes 87 clinics across the U.S. and Canada.

But NF is lifelong, and as Joe and Andrew grew older, the families found a gap they could not ignore. Adults with NF still need specialists who understand the condition and work together. They may also face new complications, including malignant peripheral nerve sheath tumors (MPNSTs), an aggressive cancer associated with NF1. Yet Los Angeles had no adult equivalent of what the families had helped build at CHLA. Rick and Amanda traveled across the country to find care for Joe. Steve and Alyson also faced hard questions about where Andrew would be treated as an adult. In 2018, Steve and Alyson unexpectedly lost Andrew at the age of 21, before they found an answer.

When Rick and Amanda began working with CTF and UCLA clinicians to establish an adult NF clinic in Los Angeles, Steve and Alyson joined them. Building the care Andrew would have needed became their way of honoring him and helping other families. Together, the couples assured nurse coordination funding for the clinic's first three years and secured a lasting commitment from UCLA to continue the role.

The UCLA Adult NF Clinic opened in 2022. It saw about 150 patients in its first year and more than 200 in its second, with more than 300 visits in 2025. Patients range from young adults to people over 60, and some travel from Nevada or the Midwest, and even internationally. Each year, 15 to 20 young adults move into the clinic from pediatric programs, including CHLA, with a coordinator guiding the handoff so their care doesn't start over at 18. Specialists from oncology, neurosurgery, and other fields meet regularly to review patients' cases together.

Steve and Alyson McKenzie

When Joe was diagnosed with MPNST, the UCLA clinic brought his specialists together. Rick and Amanda lost Joe in 2024. Coordinated care could not change that outcome, but it meant his doctors could discuss his case and make decisions together, and his parents did not have to assemble that team on their own.

Richard Everson, MD, a neurosurgeon with UCLA's NF clinic who came to know Rick and Amanda through Joe's care, has seen the value of that approach firsthand. "I think the growth of NF clinics around the country has really indicated the necessity and the benefit of getting centralized, specialized NF care," he said.

Rick described what a clinic close to home gives back to families: "We knew we were in good hands at UCLA. It freed us up to focus on each other."

At the 2026 National Gala, the Children's Tumor Foundation will honor Rick, Amanda, Steve and Alyson with the Cloud Carrier Award, which they will accept in memory of Joe and Andrew. They hope their story will draw attention to the work still ahead. The NF Clinic Network has grown, but specialized adult care remains difficult to access in many parts of the country.

Children with NF grow up. The care available to them needs to grow with them.

On November 16, 2026, NF patients, families, researchers, and leaders will gather at Capitale in New York City for the Children's Tumor Foundation's National Gala, celebrating the people driving NF research and care forward.