January 27, 2021

Each month a wonderful group of young adults and teens who are diagnosed with TBRS gather for our Social Group via Zoom. With the help of a volunteer facilitator we have a blast with activities that are usually requested by our group members. You may find us doing anything from dancing and joke telling to karaoke and rock painting. We have even had a few younger kids join us for some of these activities. The group is ever evolving and always a fun time. There is no pressure to chat if you are feeling shy, and you don’t have to participate in the activity if you would rather just talk. Zoom makes it possible to have participants from all around the globe. Please reach out to [email protected] if you are interested in joining us. If you or a loved one are diagnosed with TBRS and you haven’t joined our private Facebook Group, please do!

The TBRS Community offers a monthly Parent and Caregiver Support Group via Zoom, so families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. Any parents or caregivers of someone diagnosed with TBRS are welcome. Please contact [email protected] if you are interested in learning more. If you or a loved one are diagnosed with TBRS and you haven’t joined our private Facebook Group, please join us!

Katherine McMahon was one of our founding board members. She devoted her life to advocacy and service on behalf of people with disabilities. She followed the stories of each person affected by TBRS like they were her own family. She cheered for our accomplishments and cried with us during difficult times. We lost Kathy to cancer in September of 2019.

The TBRS Community established The Katherine McMahon Memorial award to keep Kathy’s spirit alive. We asked for nominations from our community to honor a person who embodies Kathy’s kindness, generosity, and “can do” attitude.

Ashley Hatton was nominated for the award, and the committee unanimously voted yes! Ashley is a bright light in our community. She is an artist and shares her joy by sending her artwork with messages of encouragement to her “TBRS friends” to brighten their days. She spearheaded The TBRS Challenge—a now annual fundraiser that raised $11,500 and inspired our community to get moving toward healthier lifestyles. She posts motivational videos in our Facebook Group, is a positive presence at every TBRS Social Group, and our community wouldn’t be the same without her. Thank you for being you, Ashley. We were so honored to present you with this award. Kathy would be so pleased.