Save-The-Date

Join Heal Team 6 for this bash to raise money to bring expert medical care to TSC families. Don’t miss this year’s fundraiser with many announcements to come! Get ready for one exciting evening!

You can play a pivotal role in our sponsorship star status! Consider any of the levels of sponsorship below for this event.

SUPER STAR $10,000.00
– Exclusive to one company or brand
– Eight tickets to the Bash
– Name/Logo inclusion as event highest level sponsor
– Name or Logo featured on all publicity materials
– Name or logo with link on Bcureful website
– Full-page ad or recognition in the event program guide
– Most prominent signage during the event

ROCK STAR $5,000.00
– Eight tickets to the Bash
– Name or Logo featured on all publicity materials
– Name or logo with link on Bcureful website
– Half-page ad or recognition in the event program guide
– Signage during the event

SHOOTING STAR $2,500.00
– Six tickets to the annual Bash
– Name or logo with link on Bcureful website
– Half-page ad or recognition in the event program guide
– Signage during the event

RISING STAR $1,000.00
– Four tickets to the annual Bash
– Name or logo with link on Bcureful website
– Quarter-page ad or recognition in the event program guide
– Signage during the event

TWINKLING STAR $500.00
– Two tickets to the annual Bash
– Name or logo with link on Bcureful website
– Company or individual name listed in the event program guide
– Signage during the event

 Where do the funds raised go?

Funds raised will go directly to our goal of research towards a cure of TSC. Tuberous Sclorsis Complex is a genetic disorder that affects 1 in 6,000 newborns (1 to 2 million people worldwide) causing non-malignant tumors to develop in the brain and other vital organs. These tumors cause devastating effects on numerous aspects of development. Research for TSC is imperative and has led to breakthroughs in autism, epilepsy and cancer. Bcureful is enthusiastic and optimistic about the PREVeNT study and our potential to contribute.
PREVeNT, the first drug study aimed at preventing or delaying the onset of epilepsy in children with TSC, began enrolling participants in December of 2016. The University of Alabama (UAB) is the lead institution and data center for the PREVeNT study, a national, multisite study funded by a $7 million grant from the National Institute of Health.
TSC predominantly affects neurologic functions, often leading to seizures, developmental delay, intellectual disability and autism. About 80 percent of children with TSC develop epilepsy within the first three years of life.

bcureful-ad-PREVeNT-web

“There is a small window, perhaps two to three months in duration, between the first detectable signs of abnormal brain activity and the onset of seizures in infants with TSC,” said Martina Bebin, M.D., professor in the Department of Neurology in the UAB School of Medicine and the study’s primary investigator. “Those detectable signs can be discovered through electroencephalography, or EEG, before any symptoms are present. This window gives us an opportunity for preventive therapeutic intervention to delay or prevent the onset of seizures.”
The study will recruit 80 infants with TSC at seven sites nationally. Electroencephalogram (EEG) monitoring will begin as early as six weeks of age, followed by serial EEG testing during the first 12 months of life. At the first sign of abnormal brain activity, half of infants will receive vigabatrin, a medication used to control infantile spasms, while the other half receive placebo. At the onset of clinical seizures, all of the children will transition to the standard of care for infants with TSC and seizures. The investigators will follow the children for three years to monitor developmental progress and the onset and severity of seizures.
The study involves up to 13 visits over a three-year period. The study visits will include behavioral testing, EEG’s, eye exams, physical exams and optional blood draws. The seven sites participating in this study are: Stanford University, University of California at Los Angeles, University of Houston, Cincinnati Children’s Hospital Medical Center, Minnesota Epilepsy Group and Boston Children’s Hospital.
The requested funding amount of $208,000.00 allows for 40 participants to receive travel reimbursements of up to $500.00 ($100.00 from N.I.H. Budget and $400.00 from Bcureful) for each of the 13 visits. The money will go directly to an earmarked account that is only distributed depending on cost of travel, it is not a stipend. We at Bcureful are hoping you will grant us the $208,000.00 to make it possible for families to enroll their infants in this study. It is imperative to remove any barriers to this critical study, with lack of funding for travel being the greatest existing barrier. Thank you for your thoughtful consideration.