A Support Group Re-Born

About the presenter: Josh Denault lives in Berkeley, California and has been a member of the National Stuttering Association for 6 years. Currently he is the Co Chapter Leader in the East Bay along with Nina Ghiselli. Aside from regular monthly meetings their chapter has put on numerous events for the local stuttering community including bi-lingual, ISAD and teen workshop events. Josh works in Biotech, specializing in automation and process improvement

A Support Group Re-Born

by Josh Denault
from California, USA

When I became a part of the National Stuttering Association's East Bay, CA support group chapter in 2007, it had recently been brought back to life by Bailey Levis and Mike Garcia. Up until that point is was pretty dormant, and had been for quite a while. Both of them put in great effort to keep the chapter afloat through that difficult stretch of time when getting PWS together wasn't easy to do.

Heading into the NSA's annual conference in the summer of 2009, our East Bay Chapter was surviving but certainly not thriving. Bailey had moved on to graduate school and Mike was doing a fantastic job trying to recruit new members and line up a steady meeting location. We got the meeting location, and although it may not have been the most convenient location in the East Bay, at least it was a consistent place we could meet. Our monthly attendance ranged anywhere from Mike and I showing up, to 1-2 others at the most for the majority of meetings.

Regardless, both of us were excited about the national NSA conference. Having been once before in the past I was able to fill Mike in, a newcomer to the conference, on what to expect. During this week he would meet hundreds of other PWS, attend some informative and interesting workshops, have a fantastic time, and make lifelong connections in some circumstances. Flying into Phoenix on Wednesday night, we were prepared to have a fantastic 4 days. What we were not prepared for however was the snowball effect it would have on us, as well as our struggling chapter.

I had known Nina Ghiselli from a workshop she put on at her school about a year earlier, but had not had much contact with her since that time. She lived locally but hadn't really been involved in the NSA or the local support group chapter in quite a while We saw each other and exchanged greetings, asking how the other had been, what they were up to, how hot the Arizona weather was etc etc. We didn't know it at the time, but very soon we would be seeing and working with each other constantly!

Sunday morning came and quite a few people were in the hotel lobby saying their goodbyes. Mike and I were waiting for a shuttle to take us to the airport, finally it arrived and we grabbed our bags and jumped in. About 5 minutes into the ride I turned around and noticed a couple in the back seat. "This guy looks familiar" I thought to myself. This guy turned out to be Michael Sugarman, one of the founders of the NSA (NSP as it was known at the time). Although he was and is well known by a lot of people, Mike and I had never met him, even though we all lived within 20 minutes of each other in the Bay Area.

We all hit it off great and decided to meet up at Michael's house the following week for dinner. Nina who had known Michael for quite some time was also invited. That following week we all gathered and the discussion quickly turned to "How do we gain interest in our chapter, in the NSA locally". The brainstorming began. Remember, Michael and others founded the organization without the benefit of internet and email, let alone social networking sites such as Facebook. If anyone knew about grassroots efforts for outreach it was him.

We decided a good way to gain interest and do productive outreach was to hold some events outside of the local chapter meetings. The brainstorming continued. What kind of events would be good to hold? What would draw a crowd, and at the same time get our names out there? We came up with 3 events that were to be held within 2 months of each other last fall. The first event was going to be the first ever NSA Bi-Lingual event, specifically targeted at non-English speaking people in the community. Looking outside the box we realized not everyone who stutters actually speaks English! We were going to make an effort to seek out those who didn't. The second event was going to be a Teen Open House held in San Francisco. Why we were trying to do outreach in the local community, why not reach out to the teens as well? A Teen Chapter did not exist at the time and it just made sense to try and get one started. The third event was going to be a workshop for International Stuttering Awareness Day. Since it began in 1998, ISAD has included an online conference held every year and we thought it might be kind of cool to actually have a live event, in San Francisco, with guest speakers. We also had a telephone line set up for people from around the world to call in and listen, should they choose too.

These were three very different events, all with their own unique needs. How do we get the word out? How do we assure we aren't the only ones who show up?? This is where we needed to get creative. Ideas were thrown back and forth at Michael's dinner table while we dined on chicken and beer. Some of the possible outreach methods that were mentioned were:

• contacting local elementary schools and colleges
• contacting local disability organizations
• outreach in Espanol (Mike being bi-lingual carried us here!)
• getting a Public Service Announcement played on a local radio station
• in person outreach via a local street fair
• creating a Facebook page(s)
• building up our website for the local NSA chapters (more on this later)

Nina proved to be our greatest asset. It seems she knows EVERYONE in the Bay Area, and if there is someone she doesn't know chances are someone she does know, would. One of the toughest hurdles to overcome for these events was actually finding a place to host the event(s). Nina had that covered. We could use a conference room at the university where she works. Problem solved. Beautiful location right on Fisherman's Wharf in San Francisco, this location has now hosted every event we have put on to date, with the exception of the Bi-Lingual Event and the Holiday Party last December.

All three of the events were great successes. The bi-lingual event in Hayward was our first, and it turned out to be a wonderful day. The event was held inside of a local shop that sells unique Hispanic artifacts. Food was served and people gathered around to talk about the importance of this event, and the outreach that still needs to be done. The highlight of the event was a 12 year old bi-lingual girl showing up with her father and grandfather. She was a PWS who had a difficult time in school and was hesitant about coming to the event. She ended up having an amazing time with all of us, and we received a very warm thank you letter from the grandmother after the event.

The Teen Open House had a great turnout, 30 or so people. We met a few teens there, and every single Chapter Leader from the 3 Bay Area Chapters was present to show their support. I gave a powerpoint presentation about the merits of forming a teen chapter, possibilities that existed and the fun that could be had. Although the Teen Chapter has not come around as easily as I had hoped, I know the possibility still exists. The Bay Area is very large and getting the teens together has proven to be difficult at times. It will happen eventually.

Our ISAD event held last October turned out fantastic. We had 4 presentations that were given to the audience by Mike, Nina, Vanna and myself. 3 people actually called in from around the U.S. to listen in, and afterwards we all went to the computer room at the university to log on and be a part of the ISAD online conference itself (all past ISAD online conferences are archived on the Stuttering Home Page - http://www.stutteringhomepage.com). Nina even had a "Happy ISAD" cake made to share with everyone. Afterwards a group of us went across the street to the Wharf and had dinner. It was a perfect way to end the celebration of ISAD.

One key component to our outreach here in the Bay Area has proven to be our local website http://www.bayareansa.com I had actually started this website a month before the NSA Conference in Arizona just for fun, but really hadn't done much with it. Once the wheels began to turn for reaching out to the community and putting on these events, I finally saw the real utility a website could provide. Soon after we returned from Arizona we began to add different components to the website. The first obvious one was to give information on all 3 local Bay Area chapters, meeting times and locations, chapter leaders and contact information. Nina and Mike went to a local radio station and had PSA's recorded that were then added to the website as well (http://bayareansa.com/Site/PSAs.html).

As soon as we started to hold local events, the event recaps and pictures were all stored on the website as well, for others to see (http://bayareansa.com/Site/Past_Events.html)

That brings up the topic of pictures. Documenting events is very important and a great way to show the outreach that is being done. Adding pictures however, takes the experience to a whole new level. We feel it is very important to document each event we do with pictures as well as a written recap.

Also, adding pictures to the website layout itself adds some flavor and interest as well. For our website, all pictures shown are of the Bay Area itself.

I have seen some very good websites from other NSA chapters and I think the trend towards making them locally is beginning to grow. The NSA website itself (http://westutter.org) is a great resource for us, and adding your own local website with information expands the outreach and ability to showcase what you are all about.

Judy Kuster approached me at the NSA conference this summer in Cleveland and asked me if I would write an article about our chapter's journey, and how we went about doing outreach in the community. I am glad she did, it has helped me reflect on what we have done, what still needs to be done, and the exciting opportunities that lay ahead.

Having a support group for PWS is important for so many of us, and it is really cool to see what can happen when you get energetic and proactive PWS together. They are capable of anything.

Finally, I would like to thank a few people who have been instrumental to keeping our chapter and the other local support groups alive and going: Bailey Levis (former Chapter leader who kept the chapter going through the difficult times) Mike Garcia (former chapter leader who was a huge part of the chapter's success in the last year before he moved away for school), Nina Ghiselli (co-chapter leader), Vanna Nicks, Heather Eisenman and Tim Benton (all have been very important in keeping the energy and interest alive, and helping to build strength behind the chapter), Jeff Olevson (San Jose Chapter Leader), Matt Schmidt and Christina Adami (San Francisco Chapter Leaders) and last but not least Michael Sugarman. His energy and ideas about how the local PWS community should do outreach and host events helped transform us into where we are today.