volunteers

Celebrating Tourette Association Volunteers

It’s Volunteer Appreciation Week (4/19 – 4/25) and the Tourette Association of America is featuring volunteers from our Tourette Syndrome community. Volunteers are the heart of our team and we are grateful to have so many people from our Chapters and Support Groups helping us to reach communities around the country. Our volunteers are passionate, energized and generous. Below are a few of the most hard-working and reliable individuals that we’ve chosen to highlight for Volunteer Appreciation Week! 

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Jennifer Sanford

Facilitator for the Mississippi Tourette Syndrome Support Group

“I was there, in the beginning of our diagnosis, when I didn’t know what to expect or where to go. I had so many questions, SO many questions!! I am so grateful for the people who were there for me during that time and I am extremely honored to be able to pass that support on to the next person.”

Tell us about yourself.

I am the facilitator for the Mississippi Tourette Syndrome Support Group. We have been in service since July 2019. In this year, I have enjoyed being a part of such a great community.

The Tourette Association of America was very open and welcoming when I decided to volunteer. I say this because the most challenging part of volunteering for me is my own anxiety. My heart is in the right place, but my anxiety and insecurity gets in the way. However, I am a teacher and naturally want to help others learn and develop.

What’s the most challenging part about volunteering?

In the beginning, it was challenging to get the group out there for people to find. But, now we are growing slowly and I am very proud of what we have become. Every time I communicate with the TAA about the support group progress, it is almost like they know my own personal struggles of anxiety and insecurities. I am told, “Do what you are comfortable doing, and grow when you are ready.” This keeps me going.

What was an unexpected learning experience that you’ve encountered while volunteering?

This volunteer work has some unexpected learning experiences. It gives the opportunity to grow in many areas. For instance, my technological skills have greatly increased, I am pushed to be more interactive with strangers (despite my anxiety), and I have built professional relationships outside of my daily routine.

I never expected to be doing anything like this yet here it is and I am so glad to be a part of it. I credit the TAA with giving me the push I needed.

What has been a favorite moment about volunteering for the TS community?

Volunteer work can really make a person develop on many levels. Some of my favorite moments of being a volunteer come when I am interacting with people. It fills my heart with joy to see a sense of relief on a parent’s face when they realize they are not alone or the positive response of a person who feels supported with resources for their work place.

Sometimes we can be afraid of the unknown but this is part of the process. It feels so good knowing I can give someone hope just by listening to them or providing resources to them.

I was there, in the beginning of our diagnosis, when I didn’t know what to expect or where to go. I had so many questions, SO many questions!! I am so grateful for the people who were there for me during that time and I am extremely honored to be able to pass that support on to the next person.

Any message of hope and inspiration for the community?

If I had one thing to tell everyone, it would be words of hope. You are not alone! Everyone’s normal is not the same and it doesn’t have to be. We are all at different stages of our acceptance or diagnosis.

While it may feel confusing or overwhelming, it will pass or it become easier to handle and you will be able to manage what life gives you with wisdom and grace.

The support the TAA and our support group offers helps you understand that you have come a long way in your own experience. Meanwhile, I am here to support you at whatever stage you are in.

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Kate and Edward Knapek

Support Group Leaders from the Texas Chapter

“Sometimes it’s tough getting the motivation to hold meetings, but when we do, it is SO worth it. Whether we have 1 person or 20 people at our meetings, the people who come are in need of support, and we’re so happy to do what we can for the TS community.”

Tell us about yourself.

We’re Edward and Kate Knapek. We have been the Support Group leaders for both the Parent & Child group as well as the Adult with Tourette Syndrome groups in Austin, TX for about 10 years. Edward, an adult with TS, has also been volunteering for Camp Du Balloon Rouge for 15 years.

Edward was the first attendee for the Austin Chapter of Tourette Texas support meetings; We took over about 8 years later. Edward has attended the National Conference and spoken to representatives from Texas in DC. He has presented to the Attorney General’s office for the State of Texas.

Edward also speaks to schools districts, teachers, and students about his experience with Tourette and teaching acceptance. Kate facilitates the meetings and organizes get togethers. She provides resources and answers question about IEP/504s for parents. We also assist with fundraising for the Texas Chapter. 

What’s the most challenging part about volunteering?

One of the most challenging aspects about volunteering is managing the time and finding balance. Edward is an Athletic Director and Kate is an Assistant Principal. We also have a 3-year-old and a 2-month-old. Sometimes it’s tough getting the motivation to hold meetings, but when we do, it is SO worth it. Whether we have 1 person or 20 people at our meetings, the people who come are in need of support and we’re so happy to do what we can for the TS community.

What has been a favorite moment about volunteering for the TS community?

Our favorite thing about volunteering for the TS community is being there for people and having them realize that they are not alone.

The members of our Austin Chapter have so many talents! We have met authors, musicians, poets, scientists, nurses, attorneys, you name it! It’s fun meeting people and wonderful when we hear them say, “We’ve never met anyone with TS before today…” Now we all have a such a diverse community of friends!

Any message of hope and inspiration for the community?

We’d like to tell members of the TS community to keep being you. We all have a purpose and it’s important to educate and inform people about TS. Let’s teach our communities about the acceptance of others!

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Janine Tejeda

Volunteer from the Southern California Chapter

I LOVE helping families and seeing the positive impact that connecting new families with our local TS community has on all of them.  Knowing that you are not alone on this journey makes a huge difference to kids, adults and families all the same; regardless of age or how you are affected, we all need the connection and support of our TS community.”

Tell us about yourself.

My name is Janine Tejeda.  I am with the Southern California Chapter and have been volunteering for about 5 years. My favorite part is educating schools.

What’s the most challenging part about volunteering?

The most challenging part of volunteering is the long distances to drive in order to reach everyone.  I want to help as many families that I can, but the California territory is very spread out.

What was an unexpected learning experience that you’ve encountered while volunteering? 

I guess I didn’t expect so many teachers and staff to know SO LITTLE about Tourette Syndrome. I expected some small amount of understanding, but explaining it to educated individuals required getting back to the basics of child development.

What has been a favorite moment about volunteering for the TS community?

I LOVE helping families and seeing the positive impact that connecting new families with our local TS community has on all of them.  Knowing that you are not alone on this journey makes a huge difference to kids, adults and families all the same; regardless of age or how you are affected, we all need the connection and support of our TS community.

Any message of hope and inspiration for the community?

In this day and age, when you are open about sharing your challenge with Tourette Syndrome, the outside world is willing to accept and understand more than ever before.  Owning your challenges and being confident in speaking out about your needs is finally met with more tolerance and understanding. 

I like to promote “End the Stigma”  but it also comes from our own members.  “Proud2BeLoud” is another hashtag  I promote.  When you are self accepting, others will follow.

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Sandy Buffolano

Board Member of the Texas Chapter, Support Group Co-Leader from the Texas Chapter

“We are on the verge of getting America educated about Tourette and why it is near and dear to our hearts. We have to keep reaching out, being advocates, and giving resources. This is the Tourette information decade and we need to keep working!”

Tell us about yourself.

My name is Sandy Buffolano and I’ve been volunteering since 1989, so it’s been 31 years with the Texas Chapter. Thank you to Nicola Ferla for nominating me!

What’s the most challenging part about volunteering?

It is challenging to see parents overwhelmed and getting push back from schools. Since I am also a licensed specialist in School Psychology, I want to be their advocate, but I can’t wear two hats. So, I advise, walk them through the process, and get them advocate help from the TAA. I am thankful for all the resources available for parents.

What was an unexpected learning experience that you’ve encountered while volunteering? 

I started as a volunteer while teaching two boys with Tourette in 1989. Their parents had received help from Sheryl Kadmon of the Texas Chapter and encouraged me to go to an educator training. I was so impressed with the need and the advocacy being received there, that I volunteered on the spot. Fast forward about 7 years and my own daughter was diagnosed with TS. It was a godsend for me to be brought to this organization and my parent perspective has broadened my own volunteer skillset.

What has been a favorite moment about volunteering for the TS community?

When I first volunteered at Camp du Ballon Rouge 18 years ago, I watched the children come to the realization that they were not alone. One camper, Michael, who was 7 years old at the time, observed a counselor’s tics and asked, “Why do you do that?” The counselor said, “I have Tourette Syndrome so I have tics.” Michael looked incredulous and said, “So do I!”

Fast forward 18 years and a young adult is sitting in support group with tears in his eyes because he has never met anyone else with Tourette either. 

Connections make the biggest impact and we have a long way to go folks.

Any message of hope and inspiration for the community?

When I present about Tourette in universities, schools, and professional conferences, attendees are eager to learn. They absorb everything and ask questions.

Social media platforms like Twitter, Facebook, and YouTube are also informing millions of people as well. We are on the verge of getting America educated about Tourette and why it is near and dear to our hearts. We have to keep reaching out, being advocates, and giving resources. This is the Tourette information decade and we need to keep working!

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Heather Ramsey

Greater Carolinas Tourette Support Group Leader

“Be Courageous! Share your story. Talking about Tourette, making it part of the conversation, is how we will reduce the stigma and spread awareness. You are not alone, and together, we will make a difference.”

Tell us about yourself.

My name is Heather Ramsey and I’ve been volunteering for 8 years. I am the Greater Carolinas Tourette Support Group leader.

What’s the most challenging part about volunteering?
The most challenging part about volunteering is reaching families in need. Our support group serves two states, and getting the word out about the available resources and providing support to all areas has been a challenge. Creating awareness of Tourette and its facts throughout communities, schools, and medical professionals encourages acceptance and tolerance, thus improving the lives of those in the Tourette community.

What was an unexpected learning experience that you’ve encountered while volunteering? 
When my son and I first went to Capitol Hill to #Rally4Tourette in 2013, sharing our journey with Tourette, I was skeptical on how our one family’s voice would make a difference. Could my request for support of Tourette initiatives truly matter at the end of the day? Over the years, we’ve met with Legislative Aides as well as Congressmen and Congresswomen, educating them on Tourette and our initiatives. To our surprise, the representatives and senators have been very interested and receptive, and we received their support because of our visits. This was the turning point for me as I realized that although I am only one voice, I can help people with TS on a larger scale.

What has been a favorite moment about volunteering for the TS community?

One of my favorite moments has been accepting Proclamations for Tourette Awareness Day from mayors around the states and from the governors of North and South Carolina. We have been fortunate to have many Proclamations granted over the five years. Last year alone, we were granted Proclamations in 22 towns throughout both states, including both governors. It’s always exciting to attend the town meetings and accept the Proclamations on behalf of our Support Group and the Tourette Association of America. This also provides an opportunity to educate even more people about Tourette.

Any message of hope and inspiration for the community?

Be Courageous! Share your story. Talking about Tourette, making it part of the conversation, is how we will reduce the stigma and spread awareness. You are not alone, and together, we will make a difference.

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Edward C. Collins

Volunteer for the Oklahoma Chapter

“The challenge to help is 90% application and 10% inspiration. What we do on behalf of TS is sometimes unnoticed and it might seem like thankless work reflecting minimal gains. However, it does make a difference in the life of children and adolescents living with TS and this is what inspires us to continue our work.”

Tell us about yourself.

My name is Edward C. Collins, Ph.D., Professor Emeritus, and I’ve been active in the Oklahoma Chapter since the mid-1970s and served on the TSA Educational Advisory Board for several years in the 1980s and 1990s.

What’s the most challenging part about volunteering?
The most challenging part is addressing the issue I often hear from teachers: “I know the student has TS, but it’s their behavior I can’t tolerate.” Many times, this behavior is related to the student’s diagnosis of TS. The challenge is to help teachers understand this complexity of TS and make the distinction, provide support, and address successful interventions.

What was an unexpected learning experience that you’ve encountered while volunteering? 
In years past, the Oklahoma Chapter had several consecutive summer camps for children and adolescents with TS. Each summer, I asked the campers to respond to the question, “How did you first know of TS and what questions and issues did it bring forth?” Always, the response from children and adolescents gave me insight and understanding of their perspectives and helped me to better explain the complexity of TS to teachers. Textbook knowledge of the diagnostic features and co-morbid conditions is certainly a start, but providing true empathy for children with TS is what makes the teacher the strong support person the student needs in the school environment.

What has been a favorite moment about volunteering for the TS community?
One of my favorite moments has been telling children and adolescents that the information they share with me is what I use to convey to teachers and what teachers need to address in the school setting to improve the school environment for other students with TS. This is most often well received and addressed by those with TS. The enthusiasm students with TS share with me continues to inspire me and help teachers and also teachers-in-training at the university level.

Any message of hope and inspiration for the community?
The challenge to help is 90% application and 10% inspiration. What we do on behalf of TS is sometimes unnoticed and it might seem like thankless work reflecting minimal gains. However, it does make a difference in the life of children and adolescents living with TS and this is what inspires us to continue our work.