On Friday, March 5 the TSC Alliance hosted our annual Volunteer Appreciating Celebration to pay tribute to the outstanding work of our incredible volunteers, who continue to work diligently around the year despite the challenges we all faced in 2020. This year, due to the ongoing COVID-19 pandemic the event was held virtually.
During the celebration we recognized four Franny Award recipients for Volunteer of the Year, one Keith Hall Distinguished Leadership Award recipient recognizing an outstanding adult with TSC, and one Dreamer Award recipient for Community Alliance of the Year.
Congratulations to our 2020 Franny Award Winners: Ryan and Andrea Beebe, Bill and Debra Joseph, MaryAnn Lamb, and Lauren and Jeff Perry!
Congratulations to our 2020 Keith Hall Distinguished Leadership Award Recipient Rob Grandia!
Finally, congratulations to our Dreamer Award recipient the TSC Alliance of North Carolina represented by Community Alliance Chair Karen Johnston.
We caught up with some of our award winners about why they volunteer and what it meant to them to be recognized as outstanding leaders in our community.
Franny Award Winners Ryan and Andrea Beebe
When and why did you first start volunteering for the TSC Alliance?
Ryan makes a Bucket List of 10 items to complete at the beginning of each year, and one of the 2020 items was to “Host a Fundraiser”, which ultimately turned into our “Getting Saucy with Parker B” fundraiser. The TSC Alliance and community as a whole have been invaluable over the past 2+ years of Parker’s journey, and we wanted to give back to this community and all of Parker’s fellow TSC Warriors.
What’s one accomplishment/moment/interaction with someone from your community in 2020 that you are particularly proud of?
To have connected with so many of the wonderful people who are responsible for the day-to-day running of the TSC Alliance as well as numerous other families within the TSC community was the most enjoyable part of 2020. And of course, to be chatting with Kari and Steve as they were “Getting Saucy” was something we won’t soon forget. To see our TSC Alliance leaders step up in a big, and spicy, way to help raise $ as part of our fundraising efforts shows what a great organization the Alliance is.
What does it mean to you to be named a TSC Alliance volunteer of the year?
To be named the TSC Alliance Volunteer of the Year means an extraordinary amount to the entire Beebe family and we know this truly could not have been done without our friends, family, and the TS community as a whole. This honor is shared just as much with everyone who Got Saucy, made a donation, shared our fundraising page, tuned into one of our live events, and helped educate their own networks of friends and family about Parker B and Tuberous Sclerosis. What started with a few mini size bottles of hot sauce has turned into so much more, and we can just hope that the awareness and fundraising it brings will help in the collective efforts to find a cure.
Keith Hall Distinguished Leadership Award Winner Rob Grandia
When and why did you first start volunteering for the TSC Alliance?
After my three children and I were diagnosed with Tuberous Sclerosis Complex, we found the TSC Alliance and attended our first Step Forward for a Cure walk in 2010. Over the next couple years we had the privilege of meeting Kari Rosbeck at the walks and getting to know her. Fast forward to 2013 and my wife Shannon and I received a call from Dena Hook that Kari had though we would be a good fit for volunteering as Adult Regional Coordinators. After discussing it, we came to the conclusion that this was a great opportunity for us to give back to a community that did so much for our family. I have been volunteering ever sense.
What’s one accomplishment/moment/interaction with someone from your community in 2020 that you are particularly proud of?
2020 was an interesting year for volunteering. I attended March on the Hill in March 2020 and just weeks after returning home everything shut down due to Covid19. Because of this we transitioned into a virtual world, which opened up the opportunity to meet more of the community. Virtual town halls, helping out with virtual Comedy for a Cure, virtual BINGO with the adult community and supporting the virtual walk helped to make this a memorable year. Virtual BINGO was a highlight because I got to connect with other adults across the country while just having some much needed fun and taking a break from the craziness of the pandemic.
What does it mean to you to receive the Keith Hall Distinguished Leadership Award?
There are no words to adequately explain what receiving the Keith Hall Distinguished Leadership Award means to me. I had the privilege of knowing Keith and calling him a friend. He was an incredible person and advocate for our community. Over the time I got to know Keith, I saw his amazing ability to be a voice for our adult community, while never being too busy to support or listen to those needing encouragement. He was someone I looked up to and hoped to follow his example. Knowing that this award is in honor of him is humbling and I am extremely grateful to the TSC Alliance for this honor.
Dreamer Award Winner TSC Alliance of North Carolina represented by Community Alliance Chair Karen Johnston
When and why did you first start volunteering for the TSC Alliance?
My interest in volunteering started with the birth of my son. After his birth, I wanted to be involved because I felt powerless with his diagnosis. I wanted to connect with other families to seek a bit of normalcy and help spread awareness while working to find a cure. I started in March 2018 as a co-chair and by May 2018, due to the out-of-state move from the chair, my role evolved into the chair for North Carolina.
What’s one accomplishment/moment/interaction with someone from your community in 2020 that you are particularly proud of?
I am so proud of the North Carolina community and so incredibly lucky to work with these volunteers. 2020 was a tough time for everyone, but NC remained TSC strong. Although there were no in-person events, our community continued to have fundraising events such as Dine out for a Cure (which became Take-out for a Cure). We also were able to host a new event, Luminate the Night, which was a luminary project that raised over $6,000. This project reached neighbors who had never heard of Tuberous Sclerosis but wanted to participate in this beautiful event. This event was a first attempt, and we plan to make it bigger and better in 2022!
What does it mean to you to have the TSC Alliance of North Carolina be named the Community Alliance of the year?
This award pushes our community to continue working together and recognizes the strength we have in our volunteers and families! We will give everything … but up for our warriors!