Read about Daniel and Friends Camp Talkalot, a support camp for young stutterers.

Motivated by his own childhood experiences with stuttering, electrical engineer Jack Sutherland, 51, of Penfield, NY, founded a one-week support camp for children and youth who stutter, which is in its fourth year of operation.

What kind of philanthropic or volunteer work did/do you do?

Jack: I started a summer support camp for children/youth, ages 6-14, who stutter. Many children who stutter have met few, if any, other kids who also stutter, since it affects only one to two percent of the population. For kids who do receive speech services through their schools, those services are on "school vacation" along with kids in the summer, and the anticipated return to school can be very fearful for kids who struggle with basic communication. The camp program brings in speech pathologists with fluency expertise, integrate emotional support reinforcement before the child returns to school, and surround the child with many other kids who stutter. The feeling of, "I'm the only one who talks this way; why am I different?" can be addressed in a supportive way. Community funding is raised to lower the cost of this service for families who can't afford to participate otherwise.

What is the name and location of the organization?

Jack: Daniel & Friends CAMP TALKALOT. It is run in Penfield, NY, out of a rental Rotary camping facility.

Tell us about the project, especially who benefited from this work.

Jack: Kids who benefit most are those who have never been involved in "group speech therapy" settings or who have gotten to know others who share similar feelings of frustration and helplessness about their speech. Others have never met adults who stutter, have learned speech control methods, and have gone on to live successful lives. So, kids who stutter benefit, and their families benefit from having their child take part in a supportive camping experience.

What inspired you to get involved?

Jack: Stuttering is often mysterious, particularly to young people who have not yet looked into the background and issues which influence speech production. In small school systems, many kids are the "only one" (or so it seems) who talk this way. Even speech pathologists assigned to schools often have little formal training in fluency issues (usually limited to one or two college courses) and have limited success to work with kids who stutter.

I have stuttered since I was 4 years old. I grew up in a small town (and small school system) with no speech pathology support. The closest thing to a "support" path was a mental health clinic 40 miles away that had social workers who were willing to counsel me. Unfortunately, my dad resisted sending me until I was in high school due to the small town stigma of "stuttering" being a mental health issue. I didn't get any formal speech therapy until I was away at college, where I went on to become salutatorian of my graduating class of 1900 students.

How did you first get involved? Give us some details.

Jack: In fall 2000 I approached three speech pathologists in the Rochester, NY, area that were experienced in working with kids and adults who stutter. I explained the concept, asked for their guidance, asked for them to volunteer time (which is wonderful because private speech pathology can cost $75 or more per hour), then I sought charitable funding to subsidize some of the program. Camp was first run in summer of 2001, and will move into its fourth year this August (it is a one-week program at this time).

What is/was the best thing about your experience?

Jack: Seeing the kids, who come into camp scared, hardly able to communicate, and withdrawn, starting to relax, make friends, and participate. By the end of the week, they have identified with a "community" of those who stutter, a community that they never knew existed. Some leave with the attitude that Robby Horton had: "It is OK if I stutter. It is no big deal. It isn't that bad if I stutter." That is progress for a kid who is a very evident stutterer, but he is coming to grips with “self-worth”, apart from the production of fluent sound.

What is/was the hardest part?

Jack: Advertising the program in a visible enough manner, on a very limited budget, to let families know about the camp. There are estimated to be 5000 kids who stutter in Monroe County, NY, alone, where our camp is situated. Although we advertise outside the area, and the program is open to all, our highest attendance yet is 30 kids/week, but we really need 50 kids/week to make the program economically viable over the long term without a bigger base of charitable support.

What was the biggest surprise?

Jack: Parents’ degree of misunderstanding of stuttering and the lack of knowledge of what the school speech therapists are trying to accomplish with their kids. The web and organizations like the Stuttering Foundation of America have made stuttering self-help literature more readily accessible, but there is still much misunderstanding shown.

What new things have you learned as a result of your experience and how have you changed as a result?

Jack: Those who are most receptive to participating in a program of this nature are also those least able to afford to attend, even with a modest tuition fee. The effect of charitable dollars for an endeavor like this is a very positive investment. The time commitment to bring this about is large, and it takes a continued persistence of a few people to keep this going.

What advice would you give to someone who is thinking of getting involved in philanthropy or volunteering?

Jack: Get engrossed in the mission. Get to know the stories of those who are helped. It will be rewarding.