In August 2005, frustrated by the lack of information and understanding about Head and Neck Cancer, the small number of specialists trained in Head and Neck Surgery, no systematic rehabilitation programs to help patients deal with difficulties such as speaking, swallowing, and dealing with daily necessities such as cleaning a g-tube, the lack of cancer support groups specific to Head and Neck Cancers, Stanley (Zack) Cherry, a licensed psychotherapist and a Head and Neck Cancer patient himself, and Brenda Villegas, a Speech Pathologist at the USC Department of Head & Neck Surgery, started the HNC Patient Support Group.
Dr. Uttam Sinha recognized the need of starting up a support group and began inviting patients. There were 5 people at the initial meeting – Zack Cherry, Brenda Villegas, myself (Joe Lapides), Blair Franks, and Jack Porter. It was refreshing and I left the meeting feeling better. 5 turned into 10, and so on. Before long, an election for leadership was held, and Blair and I were chosen to head up the group.
Over the past six years the group has grown from the initial 5 members, to more than 200 members that have attended 1 or more of our gatherings.
There are consistently more and more new members who attend our support meetings, and many are HNC survivors who have received treatment at other facilities. It is bittersweet because 1) our purpose is recognized, but 2) it also means there are more people being diagnosed.
Now we are a 501(c)(3) non-profit organization. We have a website and FB page and have people from different places around the world who have contacted us.
We have developed a program in conjunction with USC Physical Therapy Associates to provide the necessary treatment for patients who cannot afford it on their own and do not have insurance. This is funded through HNC Support International from donations we have received through our fund-raising efforts.
It has been an amazing journey and watching the group grow only means we must be helping. That’s what we are here for, to support survivors, patients and their caregivers.
Joe Lapides, President