Team Lionheart continues the fight for a fourth year to find a cure for Tuberous Sclerosis!
Our son Richard was born with a currently incurable genetic disorder called Tuberous Sclerosis. Richard is 8 years old this year and making great strides in school. He continues to be a sweet and caring boy, with a lot of potential and a huge amount of heart. We are, as always, so proud of him and how hard he works every day to make progress despite his many challenges. So now we're trying to do our part by raising money to fund research into therapies and ultimately a cure for Tuberous Sclerosis.
The biggest news this year is that Richard has been participating in a clinical trial to test the drug, Affinitor, for possible benefits to cognitive function and behavior. The drug has previously been approved for use in shrinking the large SEGA tumors that grow in some of our TS kids' brains. It has been remarkably successful for that use and in shrinking skin tumors, called angiofibromas. We are hoping that the clinical trial will help shed light on these apparent cognitive and behavioral benefits, seen anecdotally in some people who have taken affinitor.
While this drug and other future ones that might be discovered are great news in the TS community and potentially for others with diseases that can be helped through this research, our dream and ultimate goal is to find a cure in Richard's life time, preferably sooner rather than later so he can benefit too!
The money that we raise goes to the national Tuberous Sclerosis Alliance and funds research, support groups, and financial assistance for hard-hit families coping with TSC. The money that goes to the TS Alliance not only helps improve the quality of life for kids and adults affected by TSC, but it gets us that much closer to finding a cure.
We need your help again this year for our even bigger goal of $4000!!
Please give what you can. And as always we would love to have any of you come to join us on our walk at Centennial Park on October 22nd. Everyone will be meeting up at the picnic shelter, registration opens at 12:00 and the 2-mile walk starts at 1:00 pm.
Thanks to you all,
Richard, Maddie, Sandy and Rick