Paul Mendelsohn, Longtime NF Advocate, Passes
Author: Mary Ann Wilson, Brenda Duffy, Beverly Dobson
Published On: 03/26/2021
On March 10, 2021 the neurofibromatosis community lost a pioneer advocate for neurofibromatosis type 2 (NF2). Paul spent tireless hours assisting NF families access medical services and health insurance. Paul Mendelsohn saw to it that his wife Helen was available to participate in foundational NF2 research, testify before Congress, and establish the NF2 Network with a quarterly newsletter. Helen had the full-blown manifestations of NF2 with tumors on both acoustic nerves and along her spine as well as impaired vision. Both she and Paul served on the governing board of their local Mid-Atlantic NF organization for many years.
In 1988 Paul became a founder and first president of Neurofibromatosis, Inc. (now NF Network), a national organization run by and for those affected by NF1 and NF2. He established the policy of including a sign language interpreter at all meetings, ensuring that those with NF2, many profoundly deaf, were included in the larger NF community. He enlisted the legal services and financial support of his entire Mendelsohn family. Paul’s encyclopedic mind, good sense of humor and practical advice made him a favorite speaker on the NF workshop and conference circuit. He also assisted in establishing the NF patient advocacy organization in Great Britain.
When Helen died in 1994, Paul’s advocacy continued. He worked with both NF Mid-Atlantic and NF, Inc. At times he volunteered at the NF Camp New Friends where he made sure camper-ships were available for any young person diagnosed with NF2 who wanted to attend.
Paul retired from government service and moved to Florida where he performed in community theater, which he thoroughly enjoyed. In recent years, when his health began to deteriorate, Paul moved back to Maryland for medical care and to be close to his family.
Paul’s legacy is his friendship with many and his inspiration to all.