We have a new wonderful logo. We hope it represents the many elements of TSC for people in Ireland and around the world.
In May, Emma Sheehan and four of her good friends completed a skydive for TSC Ireland and raised over €10,000. Emma is mom to Daragh (age 6) and Eabha (age10). Eabha has TSC and Emma is her main care giver.
“What an incredible experience, terrifying and exhilarating. I’m grateful to Eabha as without her to inspire me as she faces her daily challenges with TSC I would never have able to take this on!”
Emma is also a recently appointed Secretary for TSC Ireland. Emma thank you so much for your fundraiser.
Money raised through fundraising will go towards
⦁ Provide support and information to families of those newly diagnosed with the condition in what can be a very overwhelming time
⦁ Developing up to date patient information leaflets
⦁ Provide improved information and education through webinars, our website and social media
⦁ Increased avenues of accessing support such as telephone support line
⦁ Providing more frequent in- person events to help further build our community.
⦁ Increase our role in advocating for improved access to appropriate medicines and more integrated health care services such as a specialist TSC clinic.
⦁ If you are interested in Fundraising or getting involved with TSC Ireland. Please get in touch at email@example.com
Growing our TSC network internationally
TSC Ireland committee members recently got to spend time with Katie Smith from USA and Dr.Stacey Bissell.
Katie currently oversees TSC Alliance’s international outreach efforts, directs government advocacy efforts and co-chairs TSC International. Katie implemented the TSC Alliance Global Alliance program, which currently includes formal partnerships with Ireland.
Dr Stacey Bissell conducts sleep-focused and behavioural research with children diagnosed with rare genetic syndromes associated with autism, epilepsy and intellectual disability. She has specific research expertise working with tuberous sclerosis complex .
Enjoying the Titanic Museum in Cork ,Mary Vasseghi, Stacey Bissell, Katie Smith , Chrity Ryan