On Thursday, March 7, 2019 the TSC Alliance held its annual Volunteer Appreciation Dinner to honor our incredible volunteers across the country and celebrate 45 years of inspiration, innovation and hope. As part of the evening’s festivities we recognized four Volunteers of the Year (the “Franny Award”), a Keith Hall Distinguished Leadership Award winner and the Community Alliance of the Year (the “Dreamer Award”). Congratulations to all our Volunteers of the Year!

2018 Volunteer of the Year Sheryl Kubala, TSC Clinic Ambassador at Dell Children’s Medical Center

Sheryl works tirelessly as a clinic ambassador to support new families when they are diagnosed with TSC.  She coordinates yearly picnics, holiday and educational gatherings in the local community.

She also supports the March on Capitol Hill each year. She works with one of the smallest groups of volunteers to lobby one of the largest Congressional delegations in DC. Each year she secures new signers, which is no small feat in one of the reddest states in the union.

To quote her nominator, “She is a compassionate volunteer and dedicated mother of three. She exemplifies the ideal volunteer for the TSC Alliance.”

Congratulations Sheryl!

2018 Volunteer of the Year Lauren Shillinger, Community Alliance Chair of the TSC Alliance of Maryland

Lauren serves as a Community Alliance Chair and Walk Chair and has been actively involved in her local Community Alliance since 2017.

Thanks to her incredible leadership, A second Maryland TSC Day of Advocacy and Awareness took place on February 28. Maryland Governor Larry Hogan included $500,000 in his FY2020 Operating Budget to help establish the Tuberous Sclerosis Complex Center of Maryland.

As her nominators wrote so eloquently, “She is innovative and always creating new and refreshing ways to connect with our community at a local and national level. She’s a go-getter and does a great job! She is an inspiration and great role model.”

Congratulations Lauren!

2018 Volunteer of the Year Carly Kaye, Community Alliance Chair of the TSC Alliance of Michigan

Carly serves as a Community Alliance Chair. Her ability to connect families with resources is remarkable. She participates in several leadership working group calls and brings fresh ideas to the table. She supports the annual Step Forward to Cure TSC walk and coordinates gatherings across her state. She is also a creative designer of TSC swag, donating a percentage of sales from her home-based business to the TSC Alliance and has designed many popular TSC t-shirts.

But her nomination form tells it best: “Despite the challenges of raising a family and a child with TSC, she is never too busy to return a message with words of encouragement or support. She is a true leader with a servant’s heart. I look forward to watching her light shine bright in the years to come as a volunteer.”

Congratulations Carly!

2018 Volunteer of the Year Lilian Ansari, Community Alliance Co-Chair of the TSC Alliance of Northern California, Dependent Adult Transition Resource Coordinator and Education Parent Mentor

Lillian serves as a Community Alliance chair, Dependent Adult Transition Resource Coordinator and Education Parent Mentor. She is a constant presence in her many different roles to support the community. She is an amazing advocate for TSC families. Despite the challenges she faces in her family life, she is selfless with her time and passion to assist countless families in the Bay Area. She assists with navigating the TS medical manifestations and the education system.

As her nominator wrote so eloquently: “Thanks to her and her knowledge, we have learned to be persistent for our son and to advocate for him and others. She continues to help our community. We are so blessed and proud to have her here.”

Congratulations Lillian!

2018 Keith Hall  Distinguished Leadership Award Winner Jennifer Waldron, Community Alliance Chair of the TSC Alliance of Connecticut

Let’s start with some comments from the nominators for this year’s winner: “She is a leader and the greatest advocate for TSC that I know. She has been my mentor for 5 years and has helped to inspired me to advocate. She goes above and beyond to spread awareness about TSC.”

Another nominee shared: “I have seen her grow tremendously for the several years I have known her. She seems to always increase her involvement. She always exudes leadership, especially on Capitol Hill, which is a place Keith loved to go. Keith was my mentor my first time on the hill.  He told me of his love of going each year. She demonstrates for people that it is “easy” when you are passionate, which is what Keith taught me.  She was definitely a force at the 2018 World TSC Conference and spoke at some of the sessions. She not only sang at the Karaoke night, she also got people involved and comfortable. And I guess that is the key to leadership, getting people involved.  She definitely does that and more.”

“I think the most unique support of Adults with TSC is how she shows her vulnerabilities. She is willing to have 100% transparency as you follow her ups and her downs, but what is truly special is how she shows others how to get back up again after a fall and does it in assorted new ways that inspire everyone to get back up again when you truly needed it.”

Congratulations Jen!

2018 Community Alliance of the Year the TSC Alliance of Greater Kansas City led by Amy Dublinske and Laurisa Ballew

This Community Alliance started in 2006 and has worked tirelessly to promote TSC awareness and support their community and the TSC Alliance. They have hosted several community gatherings and fundraising events in 2018. They hosted a kickball tournament, fall and holiday gatherings and events have included families from several other states throughout the Midwest. The community began with a few moms wanting to make a difference in a large community where numerous families were silently battling TSC. The need for a community support group was abundantly clear. Amy has been very active within the government relations team both nationally and locally. She has helped others become more involved locally and encouraged other TSC families to become active not only in government advocacy but within our TSC community.

“As employees of Children’s Mercy Hospital she has met many families and many expectant mothers who have just been given a TSC diagnosis. She has helped them navigate the TSC system and with appropriate medical care. They have been instrumental in having a presence within the new TSC Clinic.  The impact our community alliance has had both locally and nationally is incredible.”

Congratulations Amy and Laurisa!