TSC Alliance: KYOVA Community Region

Opportunity to participate in research!

Participate in a research study to help investigate the factors that influence adherence, or following, to surveillance guidelines in individuals with tuberous sclerosis complex (TSC). This survey will take about 10-15 minutes, and all responses gathered from this survey will be kept anonymous and confidential.

This survey will include questions about the following topics:

Basic demographics
Symptoms that you or your child experience
Understanding of surveillance guidelines
Attitudes towards TSC surveillance
Healthcare experiences with TSC surveillance

Complete the survey here: https://redcap.research.sc.edu/surveys/?s=73WRX3RWCPMLDHWW

Please contact Kashish Khanna at [email protected] with any questions.

⭐ Mark your calendars for the 2026 TSC World Conference! ⭐

Start planning now to join us at the 2026 TSC World Conference scheduled for July 30 to August 1, 2026, at the Ga***rd Rockies Resort & Convention Center in Aurora, CO!

This conference, held every 4-5 years, promises to be one of the largest tuberous sclerosis complex (TSC) gatherings around the globe, covering all aspects of TSC across the lifespan, including:

✔️ The latest and most comprehensive TSC diagnosis, treatment and research information from the world’s leading TSC clinicians and scientists

✔️ Assistance through the myriad of educational, transitional, financial and emotional challenges of TSC

In addition, as a conference attendee you will receive:

✔️ The opportunity to meet hundreds of other families and individuals with TSC and make life-long connections

✔️ A better understanding of the role the TSC Alliance and Tuberous Sclerosis Complex International (TSCi) play in research, support and government advocacy both in the United States and around the world

✔️ Q&A sessions with expert clinicians and researchers

✔️ Professionally staffed day camps for children with special needs, siblings and dependent adults

Save the date here: https://ow.ly/5XRB50TWJBY

More information to follow in 2025!

Help plan Step Forward to Cure TSC events in 2025!

Are you passionate about making a difference in the lives of those affected by tuberous sclerosis complex (TSC)? We're looking for volunteers to join the 2025 Step Forward to Cure TSC National Planning Committee!

This is the largest event dedicated to finding a cure for TSC. Over the past 22 years, our community, volunteers, and partners have raised over $20 million! In 2025, we’re excited to host 16 in-person walks across the country, with virtual participants joining us to raise awareness for TSC.

As part of the committee, you’ll help plan these amazing events, uniting thousands of people in support of groundbreaking research and vital programs.

Interested? Complete the form to get involved: https://ow.ly/fbHp50TCGWM

TSC in the news!

Read more:

Greater Cincinnati family needs help raising funds to get seizure alert dog for young son A Deerfield Township family wants to adopt a life-saving service dog for their 7-year-old son.

Welcome to the TSC Alliance: KYOVA Community Region. The region includes Kentucky, Ohio and West Virginia.

Nominate an outstanding volunteer in your community for the Franny Award!

The Volunteer of the Year award is given to up to four outstanding volunteers who have made significant contributions to the TSC Alliance. Since 2013, nominees are not only evaluated based on the previous 12 months’ work but also on their entire contribution to the organization, with emphasis on specific contributions in the last year.

Please note that past volunteer of the year winners are not eligible. Here is a list of previous winners: https://ow.ly/mKMy50Qmoyq

We encourage you to nominate those who have made a significant impact through their volunteer service and have reflected the mission of the TSC Alliance: striving for a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.

The deadline for all nominations is January 12, 2024.

Submit a nomination here: https://ow.ly/9zm350Qmoys

Nominate a dedicated TSC advocate for the 2023 Keith Hall Distinguished Leadership Award!

In 2012, the TSC Alliance launched an initiative to make every adult with TSC feel welcome and valued in the TSC community. This initiative has grown to include various volunteer leadership positions with individuals dedicated to supporting other adults with TSC as well as dependent adults and their caregivers. The late Keith Hall was an adult with TSC who championed this initiative. He gave his time selflessly, serving on the TSC Alliance Board of Directors, Adult Task Force and as a spokesperson for our adult efforts. In addition, he took his passion and advocacy for all individuals and families affected by TSC and channeled it into his local TSC community through the Step Forward to Cure TSC walk, community gatherings and educational meetings, and the annual March on Capitol Hill.

In honor of Keith’s legacy, the TSC Alliance created the Keith Hall Distinguished Leadership Award. The annual recipient of this award will be an adult with TSC whose efforts mirror that of our most passionate advocates.

The deadline for all nominations is January 12, 2024.

The nominee must be an adult with TSC. Please note that past award recipients are not eligible. Here is a list of previous winners: https://ow.ly/uhP150QkKy5

Submit a nomination here: https://ow.ly/8Uav50QkKy2

Nominate an outstanding TSC Community Alliance for the Dreamer Award!

The Dreamer Award is given to one outstanding Community Alliance that has made significant contributions to the TSC Alliance. The selected winner will be evaluated based on contributions over the previous 12 months.

We encourage you to nominate Community Alliances that have made a significant impact through their activities and have reflected the mission of the TSC Alliance as a volunteer branch that is striving for a cure while improving the lives of those affected by TSC.

The deadline for all nominations is January 12, 2024.

Past Community Alliance of the Year recipients are not eligible. Here is a list of previous winners: https://ow.ly/JMcl50QkgFA

Submit a nomination here: https://ow.ly/k1rb50QkgFB

Are you an independent or semi-independent adult with TSC? If so, please join us for our upcoming free Topic Call TONIGHT! The August Topic Call will feature an open forum moderated by TSC Alliance Director of Community Programs Gail Saunders and Community Programs Manager Elizabeth Skufca.

You can join using your computer or dialing in on the phone.

The next Adults with TSC Topic Call is Wednesday, August 16, 2023 at 8 PM Eastern | 7 PM Central | 6 PM Mountain | 5 PM Pacific

You MUST register in advance to participate in a call. Register now: https://ow.ly/TYRQ50PxLce

If you have questions before the call, contact Shelly Meitzler at [email protected] or (800) 225-6872.

Are you an independent or semi-independent adult with TSC? If so, please join us for our upcoming free Topic Call this week! The August Topic Call will feature an open forum moderated by TSC Alliance Director of Community Programs Gail Saunders and Community Programs Manager Elizabeth Skufca.

You can join using your computer or dialing in on the phone.

The next Adults with TSC Topic Call is Wednesday, August 16, 2023 at 8 PM Eastern | 7 PM Central | 6 PM Mountain | 5 PM Pacific

You MUST register in advance to participate in a call. Register now: https://ow.ly/TYRQ50PxLce

If you have questions before the call, contact Shelly Meitzler at [email protected] or (800) 225-6872.

Are you an independent or semi-independent adult with TSC? If so, please join us for our upcoming free Topic Call! The August Topic Call will feature an open forum moderated by TSC Alliance Director of Community Programs Gail Saunders and Community Programs Manager Elizabeth Skufca.

You can join using your computer or dialing in on the phone.

The next Adults with TSC Topic Call is Wednesday, August 16, 2023 at 8 PM Eastern | 7 PM Central | 6 PM Mountain | 5 PM Pacific

You MUST register in advance to participate in a call. Register now: https://ow.ly/Cn2550PxLcC

If you have questions before the call, contact Shelly Meitzler at [email protected] or (800) 225-6872.

0 to 6-month-olds with TSC are needed for a research study!

For more information, visit: https://ow.ly/pbG450OYiem

Questions? Please email: [email protected]

Check out this TSC Now episode with Darcy Krueger, MD, PhD, Director of the TSC Center of Excellence at Cincinnati Children’s Hospital and member of the TSC Alliance Board of Directors, providing an overview of the trial: https://ow.ly/5nVj50OYiel

Join us for an Adult Topic Call focusing on Epilepsy in TSC Adults, on Wednesday, June 21, 2023, at 8 pm ET.

This call will feature Dr. Bauer, an adult epileptologist at the University of Virginia who co-directs the University of Virginia TSC Clinic. He is also an adult with TSC and was diagnosed at age 12, and is a current member of the TSC Alliance Board of Directors.

Register today! http://ow.ly/KcYX50OAOmG

Join us for an educational discussion hosted and sponsored by Nobelpharma!

In this webinar you will be joined by Erin Fonseca, RN, BSN, Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital, where she will be sharing her experiences navigating patients through the treatment process for Facial Angiofibroma associated with Tuberous Sclerosis Complex.

Please join to learn more about facial angiofibroma associated with TSC, treatment options, and additional resources.

Register for one of two sessions on Wednesday, June 21, 2023:

• 12:00-12:45 pm ET
• 5:00-5:45 pm ET

Register here:

Nobelpharma America Webinar Join Us for an Educational Webinar!

JOIN US THIS SATURDAY, NOVEMBER 19, FOR AN OHIO TSC FAMILY & FRIENDS GATHERING! Please RSVP by contacting Tammy Thorne at 606-571-3882 or [email protected].

JOIN US FOR AN OHIO TSC FAMILY & FRIENDS GATHERING ON NOVEMBER 19! Please RSVP by contacting Tammy Thorne at 606-571-3882 or [email protected].

The TSC Alliance is now accepting applications for the Future Leaders Class of 2023! The deadline to apply is TOMORROW Friday, October 28, 2022.

Apply now: http://ow.ly/f8AY50Laukl

The Future Leaders Program is a group of individuals ages 17 through 27 and includes young adults with TSC, siblings of someone with TSC, or other relatives of someone with TSC who are dedicated to building community leadership skills through volunteerism. The Future Leaders program is committed to empowering young adult leaders through mentorship, volunteer services and grassroots advocacy to help develop community-minded change makers and leaders.

Future Leaders will meet monthly to plan and implement young adult volunteer projects, develop strong communication through online and in-person events, and participate in grassroots advocacy initiatives throughout the calendar year (Jan 1, 2023 – Dec 31, 2023).

You can read a full program description here: http://ow.ly/sfgN50LaukW

If you are between the ages of 17 and 27 and are a young adult with TSC, a sibling, or a TSC relative and are interested in finding a place where you can make new friends, learn valuable leadership skills, and make a difference, the Future Leaders Program is great opportunity to get involved and we are excited to meet you!